Grieving Before A Death: Understanding Anticipatory Grief

I spent a lot of time with my grandmother when I was growing up. When I was young, before I started school, my grandmother watched me while my parents worked. I have many fond memories of walking the alleys by her house to the playground, helping her stuff grape leaves and roll cookies, playing the piano, painting our nails together, watching All My Children, and eating her delicious lentil soup.

But let me back up a bit. Long long before that, when my mother was just a twinkle in her father’s eye, my grandparents emigrated to the United States from Greece. They did what most good Greeks did: they opened a restaurant and they had children. But life did what life does sometimes – it took my grandfather way too soon, leaving my grandmother a widow with two elementary-school aged children. My grandmother ran the restaurant on her own, raising her two children in an apartment upstairs. A vision of the American Dream, she sent her children off to college, one to the Ivy League, and one at the top of her class through college and pharmacy school. In her retirement my grandmother moved to Baltimore. She stayed busy as a church volunteer and as a babysitter to her grandchildren. In her eighties she was still spending twelve hour days at the Greek Festival making loukoumades and selling pastries.

In her late eighties my grandmother had a stroke. The years that followed brought dementia that slowly took away the fiercely independent woman we knew. She was a version of my grandmother, a woman who was still kind, who still prayed, and who still loved having her nails painted. But this version of my grandmother spoke less and less, came in and out of awareness, had to be reminded who we were, and could no longer care for herself.

When my grandmother died just shy of her 95th birthday in 2004 I am not sure I had ever heard the words ‘anticipatory grief’. And yet I remember so well thinking that we had been saying goodbye over the past six years, as she had slowly slipped away. Though she had still been with us in body, we had been slowly mourning the loss of her personality, her independence, her memory, and her awareness for years. Remembering who she had been, it was like we had been watching her fade away.

Anticipatory Grief: the nitty gritty

Here is the thing about grief – though we think of it as something that happens after a death, it often begins long before death arrives. It can start as soon as we become aware that death is a likelihood. Once death is on the horizon, even just as a possibility, it is natural that we begin to grieve.

Though this is different than the grief that follows a death, anticipatory grief can carry many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression. These complicated emotions are often coupled with the exhaustion that comes with being a caregiver or the stress of being left alone when someone goes to war or is battling addiction. We are aware of the looming death and accepting it will come, which can bring an overwhelming anxiety and dread. More than that, in advance of a death we grieve the loss of person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity and our own, and countless other losses. This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.

When we know a death is imminent our bodies are often in a state of hyper-alertness – we panic whenever the phone rings, an ambulance must be called, or when our loved one deteriorates. This can become mentally and physically exhausting. The same is true of watching a loved one suffer, which is almost always part of a prolonged illness. Caring for them as they suffer takes an emotional toll on us. These things (and others) can contribute to a sense of relief when the death eventually comes, and a guilt that can come with that relief. These feelings are common and totally normal when someone has experienced an anticipated death. And yet we feel guilty for this relief, thinking it diminishes our love for the person. It doesn’t, of course, but this relief can be a confusing feeling. We sometimes need to consciously remind ourselves that the relief does not change the deep love we had for the person, rather it is a natural reaction to the illness.

There have been numerous studies showing that anticipatory grief can reduce the symptoms of grief after a death but, as always with grief, there are no rules. There will be times that anticipatory grief may reduce the intensity of grief following a loss, then there are many times that the grief following a death is not impacted at all. For a great review of the research on anticipatory grief (and understanding of why much of the data conflicts), see this article by Reynolds and Botha. What is important to keep in mind is that if you are grieving with less intensity or for shorter duration than other losses because of the anticipatory grief you experienced before the death, that is totally normal! On the flip side, if you do not feel your grief is diminished despite it being an anticipated death, that is totally normal too! Convenient, eh? There is no formula for how an anticipated loss will impact us because we all grieve differently.

Things to Remember When Dealing with Anticipatory Grief

Accept that anticipatory grief is normal. You are normal and feeling grief before a death is normal. You are allowed to feel this type of grief. Seriously. This is a common phenomenon that has been documented for nearly a century. You are not alone!

Acknowledge your losses. People may say annoying things like, “at least your mom is still here” that minimize what you are experiencing. Allow yourself to acknowledge that, though the person hasn’t died, you are grieving. Consider journaling, art, photography, or other creative outlets to express the emotions around things like acceptance of the impending death, loss of hope, loss of the person you once knew, loss of the future you imagined, etc. Explore mindfulness (we have a post on that here)as a way of being present and aware of the many emotions your are coping with.

Connect with others. Anticipatory grief is common among caregivers, but unfortunately when all your time is consumed with caregiving you may feel totally alone and isolated. Seek out caregiver support groups, either in your area or online, so you can connect with others who understand the challenges you are facing, including anticipatory grief. There is an online anticipatory grief forum that is active here if you are looking for online support.

Remember that anticipatory grief doesn’t mean you are giving up. As long as you are there for support, you are not giving up on a family member or friend. There comes a time where we often accept that an illness is terminal and that recovery is no longer a possibility. Though it is a reality, there can be a feeling of guilt that comes with that acceptance. Focus on what you are doing – still supporting, caring, loving, creating meaningful time together, etc. You are shifting your energy from hope for recovery to hope for meaningful, comfortable time together.

Reflect on the remaining time. Consider how you and your loved one will want to spend that time together. Though what we want may not always be possible, do your best to spend your remaining time together in a way you and your loved one find meaningful. If your loved one is open to it, you may want to discuss practical matters, like advance directives and funeral arrangements to ensure that you are able to honor their wishes (rather than being stuck having to guess what they would have wanted).

Communicate. Just like we all grieve differently, anticipatory grief is different for everyone. Expect that everyone in your family may be experiencing and coping with anticipatory grief in different ways. Keeping the lines of communication open can help everyone better understand one another. If you are planning for the remaining time to be meaningful and comfortable, make sure to include all the important family members and friends in those discussions.

Take care of yourself. I know, vague and way easier said than done!! But it is true. Check out our posts on self-care (for normal people), yoga, and meditation for some ideas of ways to take care of yourself. Remember the old cliché, you can’t take care of others if you don’t take care of yourself.

Take advantage of your support system. Caregiving and anticipatory grief can be a long road. Do an assessment of your support systems so you know which people may be able to help you out (and who you may want to avoid!). We have a great support system superlative journaling activity to help you out with your assessment here.

Say yes to counseling! I know, there are still some of you out there who may think counseling is just for wackadoos. I am here to tell you that is just not true! Counseling is helpful for normal, everyday people who just need a place to process complicated emotions and have some you-time. So just say yes to counseling if you are feeling overwhelmed with the feelings of anticipatory grief. You can check out our post on finding a counselor here.

Relief is normal. In the case of anticipated loses there can be months, years, and even decades of caregiving that can be overwhelming and exhausting (though adjectives don’t even seem like enough!). When someone dies there can be a sense of relief that is completely normal, but that can also create feelings of guilt. Remember that feeling relief after an anticipated death does not mean you loved the person any less. It is a normal reaction after a stressful and overwhelming time in your life.

Don’t assume. Just because your loss was an anticipated loss, do not assume this will either speed up or slow down your grief after the death. We have said it before and we will say it again: we all grieve differently.

Hey, we have a print resource on this topic. Click on the image below for details.

Have you had experience with anticipatory grief? Leave a comment — we are all a little better when we can learn from one another.

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165 responses on "Grieving Before A Death: Understanding Anticipatory Grief"

My name is Reggie Manfred, I’m from United State GA. I was diagnosed of Emphysema (COPD) in 2018 and I have tried all possible means to get cured, i even visited pulmonologist but all to no avail, until i saw a post in a health forum about a herbal doctor from Africa who prepare herbal medicine to cure all kind of diseases including Emphysema, at first i doubted if it was real but decided to give it a try, when i contacted this herbal doctor via their website, he sent me the Emphysema herbal medicine through courier service, when i received this herbal medicine, he gave me step by instructions on how to apply it, when i applied it as instructed i was totally cured of this deadly disease within 5 weeks of usage, if you are suffering of this diseases you can as well Contact this great herbal doctor on their website at: http://solutionhealthherbalclinic.com

My husband was told he had 6 months to live nearly 4 years ago then in May they said he was end of life it’s become very difficult I’m living every moment with him wondering how he feels etc he’s ask emotionally abusuve always been like this really but he says shocking things to me I have to carry on its brought my IBS on terribly can’t eat feel sick crying anxiety strange feelings thoughts but a carer never has a carer it’s nice to find this site as I can see lots are like me it become undesirable at times but we must find some strength fir. Somewhere God bless you all

For 6 mths my mother had been in and out hospital. 3 mths ago she agreed to go into a nursing home as she was unable to care for herself. On the 14 September she was re admitted to hospital, and sadly passed away on the 29 September, 4 days after her 81st birthday. When I received the phone call I remember feeling relieved for her and myself. It had been a hard watching my mum fade before me, the last 2 wks watching her slowly dying before me was torture. Since her passing there has been very few tears, no feeling of loss, i did my greiving before she died.

To the person who just 5 days ago asked, how can I acknowledge the fact that my father is dying? I too have ignored the fact that my dad is dying, even though he does not have a terminal illness other than something called Aging. I don’t know how you deal with it, the only thing I can tell you is try to commit to memory and fill your heart with the things that you can enjoy and see right now, because one day those will be the only things left. Don’t let this knowledge spoil what you have right this minute.

Only 6 weeks ago my daddy was an active, healthy 65 year old man. 5 weeks ago he started to feel off, losing weight, growing weak and tired… 3 weeks ago he was able to walk, 2 weeks ago he needed a wheelchair… a week ago he was admitted to the hospital, 4 days ago they told me he had only 3 months to live. He has inoperable liver cancer, it came on so fast and has stolen so much of him already!! I brought him home from the hospital 3 days ago, and we have palliative/hospice care coming. I find myself choking on screams that I cannot let fly. I feel like someone has kicked my feet out from under me and sucker punched me at the same time. When they gave us the news I ran away, just got up and ran away… I had to put some distance between me and the news that my vibrant, beloved, funny dad who was able to survive a car falling on him is not going to be able to beat this, but the pain was ahead of me, everywhere I turned it was there, no escape. I want to scream and break things… I would give anything to take his suffering away, to give him back what he has lost ANYTHING!! And the moment I think I am okay, I find myself alone and the crying comes like a tsunami, and landslide and earthquake and I can’t breathe. The days are bright and sunny and I feel like I am caught in this bubble filled with a raging storm . How can the days fly by like this? How can we have already got to the point where nothing can be done, we only just found out about the cancer?? Its all so surreal!! This is the first time I have admitted that my father is dying… have I just signed his death warrant?!! Am I going crazy? I want someone to tell me this is all just a mistake… that my father is not going to be taken away… but unfortunately that will not happen. How do I describe the emotions… anger, determination, unconditional love, fear, hurt that goes deeper than my bones, lost…

Grief for me is being estranged from parents who abused us growing up. My brother died as a young child leaving myself and my older sister to fend for ourselves. I have seen evil growing up in that home. I had my dog murdered. We almost were too. My sister somehow forgave them as most survivors do and they all blame me for the past. I tried to kill myself a few times due to memories. Since they are pillars of the community no one believes me. It’s ok, god does. I don’t think I’ll ever have peace till I’m gone.

I suffered from anticipatory grief in February of this year when my great Dane was diagnosed with osteosarcoma. I couldn’t work, couldn’t function and spent my waking hours crying. I have suffered on and off with mild depression but by far suffered from the worst depression known to me during that time. It took me days to find the strength to educate myself and step back to look at our situation and what we can control. We went through with amputation, holistic healing and absolutely smothered my sweet boy with love. This past Friday we lost him due to heart failure, and although it has been difficult, I have suffered significantly less than in February. We feel at peace that his suffering would never return to him, and that we would never have to make the decision to help him to rest. He made that decision on his own and we were there to support him in his transition to the other side. I am extremely thankful for my experience with anticipatory grief, simply because without it I know at this time I would be suffering those same feelings, plus more due to the steady decline and limited time to prepare for the end. I can now focus on what good things we brought to his life and what amazing things we brought to his in his short time with us. We saved him from a terrible situation and saved his troubled soul to give him everything and more he could ever possibly need.

I’m thankful to have found this article. My parents are in their 70’s. I had my first child in April and that has somehow made me hyper aware of their mortality. I am an only child and extremely close to my parents so I know that losing them will be life changing. I’ve thought about seeing a counselor to work through this but wasn’t sure what I was experiencing until I read your article. Thank you for that.

I was diagnosed with Chronic obstructive pulmonary disease (COPD) and put on Prednisolone on december 29th, 2017. I followed it 100% for a month and could not help me the way am expecting. Finally i began to panic and called my doctor, he told me to get used to it. He said I would be on Prednisolone my whole life. At that point my life messed up and began to do a lot of research. Then I found Seth COPD story (google ” How I reversed my copd with herbal remedies” ) I read that article from end to end because everything Seth was saying made absolute sense. I started using the COPD herbal remedy february this year, product of BEST HEALTH HERBAL CENTRE. There was no diet involved, no side effect which was extremely marvelous. After the first 4 weeks of usage, my shortness of breath, chest tightness and cough disappeared completely. My COPD was totally reversed after 6 weeks of usage. Now am living COPD FREE

Further to my earlier note … As I continue to “reflect on the remaining time”, to hopefully share meaningful experiences with my frail mother, I wonder why she continues to be so angry towards me? No matter what I try, I never seem to be enough for her. My efforts are unnoticed or dismissed, not appreciated, mocked, and even criticized; she never asks how I am or how my family is; she never initiates any contact with me (no phone calls or included in her plans); our conversations are brief and superficial; I regularly offer assistance to her and even that is not graciously accepted. I am at a loss on how to improve our “remaining time”, and I wonder if she will continue to be so harsh with me until her dying days. Such a sad possibility, to have these lasting memories of her final days, weeks, months.
I know our life-long strained relation has never been a model mother-daughter heartfelt sharing, but even at this stage of her demise, we just can’t seem to rectify or improve the situation. I realize that I can only be responsible for my own actions and have tried valiantly to soften her reactions, but walking on eggshells is a tricky business. I dread the upcoming mothers’ day, as I have for many years; my mean mother will sabotage whatever my plans may be – they will not be enough?! Does anyone else have similar challenges with their Mom? If yes, how were you able to cope with these sad times? ? Any advice would be gratefully welcomed. Thank-you.

I wish I had read this before my dog had died…I had this for three years while we were fighting her cancer, and the longer it went on the more I began to feel as though she wasn’t going to make it, and having that feeling of relief at the idea that it might all be over soon, and then guilt at even thinking about being relieved, worrying that that meant I didn’t love her enough, guilt at even grieving since she was still there, feeling like I had given up hope and faith…I’m just glad to know that was all normal.

Over the last three years I gradually became the primary caregiver for my wife. She had health with diabetes and all it’s many complications for over 30 years. I had seen her through legal blindness to surgery that restored her sight. I had watched her develop congestive heart failure, lymphedema in both legs and, near the end, kidney failure. I look back and realize that for several months this was exactly what I was going through. I would find myself crying for no apparent reason. I was frustrated that there was nothing I could do to solve this problem. There seemed to be no treatment that improved the situation. At the end the only thing I could do was sit by her side for the last four days in the hospital where she died on Christmas Eve. The grief is not lessen but I can certainly see that I was anticipating my loss for months if not years before. Thanks for the article and for helping me see a part of me here.

Wow. It has been almost 14years since my parents died. My Mom was the caregiver of my Dad. He had diabetes and didn’t really take care of himself. He was diagnosed with hypertension at 17 years old, so he was not drafted for Vietnam. So u all know that those two diseases are like seeds to a tree…they branch off into heart failure, strokes, blindness, amputations, kidney failure etc. Well, my Dad had the kidney failure first, then came an amputation. My Mom took care of him, but wasn’t taking care of herself. At 54 years old, she had a massive stroke and died two days later. My sister then moved in with my Dad to keep an eye on him. He could still take care of himself for the most part. But there were still the occasional ambulance calls in the middle of the night because his glucose would drop too low. Again, not taking good care of himself. He started on peritoneal dialysis at home. He then had to go on hemo dialysis. This man could once lift my sister and I at the same time, while we sat on each foot…now can barely lift his walker. Watching him deteriorate before our eyes was extremely difficult. I have experienced both sudden death and lengthy illness death. They both knock you for a loop. My Dad died at 59 after the failure of a double kidney transplant. I felt so guilty for feeling relieved that there would be no more ambulance calls or long stays at hospitals. It took counseling to finally be ok with those feelings. I too felt horrible for being relieved. I was 34 when Mom died and 36 when Dad died. I still have moments. I think I always will. But I am ok with those moments.

My mom has been a a beautiful strong wonderful person but she has been deteriorating over the last two years. After many tests mri’s, ekgs, blood tests etc she has diagnosed with ALS With the rate of which her muscles and nerves are failing they have given her 2 years maybe 3. I am an only child and have been taking this very hard. My husband and friends have been doing their best to be supportive but I cry all the time I hurt all the time and I keep falling into a darker depression. My father has been doing just as bad and its hard to be around each other because we just don’t know what to say. This post helps me understand a little of what I am feeling. Ive done therapy but the doctors haven’t been able to help and just want to medicate me. My life has flipped upside down and I don’t want my mom to leave me. I get its life but to have such an unknown disease leaves me with so many unanswered questions.

Thank you so much for this wonderful article. I’m someone who was in the habit of keeping my emotions firmly in check, but through a Mindfulness course I’ve learnt ways of not only processing my feelings, but of understanding what I’m feeling. On reading your article I realised that what I’m feeling watching the slow decline of my 86 year old mother is anticipatory grief, normal and to be expected. To watch my mother gradually lose the bloom of youth and the sparkle she had in her middle years is tough, but I’m glad I’m creating memories with her. I have footage of her filmed with my iPad talking about her childhood, reflecting on her own feelings around my grandmother’s death when my mother was only 13 years of age, so much to remember when we finally have to say goodbye. I live in London, she lives in the Midlands – an hours train journey away. I spent yesterday with her – a ‘heavy’ day emotionally. After emergency admission to hospital earlier this week, she was tired, drained, reflective. She shared with me how hard it is getting old. She talked about no longer feeling able to do the things she once took for granted. I could only listen and offer comfort where I could. On my journey back to London I wrote this:

Skin
Puckered like a mouth preparing to offer a kiss.
Skin
Folding like a gentle landscape of human contour lines
Fragile.
If I touched it, that skin, would it turn to powder under my finger tips, become dust?

Hands
Pale
Almost translucent
Pigment slowly fading
Nails, still beautiful
Fashioned into crescent moons
A residue of red nail varnish still evident.
You use these hands to think
Increasingly they flutter as you grasp in the corners of your mind for a name, a word, a memory.
Your index finger sometimes gently pointing, tapping as you reach deep into the years.
That same finger conducting your own inner orchestra.

Mouth
Firm, but soft – especially when deep in thought
Fully formed – showing still the beauty of your youth.
I search your lips desperate to find me, to find something we share.
In my mind I return to the first time I kissed you – taken by surprise at the softness of your lips.
Lips I’m sure kissed us gently as children, your children, held in your arms during those first moments of birth.
Kisses we may not remember.
Kisses forever imprinted in our souls.

Voice
Gentle
Hesitant
You still speak for yourself, increasingly we speak not for you, but with you.
A voice still strong with that beautiful Jamaican lilt – evidence of birth, heritage, history.
Your pronunciation still makes me laugh sometimes.
Sayings built on our Jamaican culture continue to educate and reassure.
Last time you sang for me.
Became a girl again.
Sang an old Sankey hymn
You began shakily, voice wobbling.
You hit your stride.
I saw and heard you as never before.

Laughter
How I love to hear you laugh.
Laughing with such mischief, often not recognising your own unique brand of humour.
Sharing old family tales, Uncle Manny, Miss Molly, great grandparents, lost loves.
Laughter sometimes tinged with sadness – laughter nonetheless.

I leave you at the door.
Instructing to stay inside, keep warm.
I hold you as you once held us.
Gently, compassionately.
With love.
I touch your skin.
No, not dust, not powder.
Warmth, love, a mother’s love oozing from every pore of your skin.

I am so grateful to have found your website; it has helped me already. Such a great resource.
My Mom’s health has been deteriorating significantly for the last 2 yrs. Currently she’s back in the hospital once again. With multiple organs failing, her Doctors have been telling us that she hasn’t much longer to live. So, I’ve tried to be prepared for the inevitable finality of her death; done all the time-consuming logistics in terms of getting her “affairs in order” (prepared her house for sale, sold it, filed her taxes & other paper work, legal stuff, wrote a draft of her obituary, contacted her surviving friends & family, priest, etc.). I attend all her medical appointments and deal with the issues at the nursing home. I offer my help to her every time we visit. Yet during this time she has shown no appreciation towards me; her anger and disregard for anything I do keeps getting worse. In fact her actions are quite hurtful to me . Actions speak volumes, right? This past Christmas, which could be her last, I didn’t even get invited to the family dinner organized by her nursing home. Instead she chose to invite my brother, niece, ex-sister-in law & her new boyfriend. No explanation was offered by her, nor apology or acknowledgement that I should have been present at this special event. Even when I asked her “why”, radio silence and a cold uncaring look was all that I got in return. It was a very sad Holiday for my husband and I (he felt hurt by this omission too). We just don’t understand her actions or lack thereof? For my entire life, she has never been overtly affectionate towards me, nor supported my endeavors, not proud of my accomplishments (education, career, etc.) nor open to honest communication; I keep hoping that we could share some special moments before she leaves this earth. She is definitely closer to my older brother and is capable of being loving to others. I see my friends & acquaintances at the nursing home dealing with their elderly parents with such mutual love, respect & humor. Yet I am never good enough to get a glimmer of this from her. I desperately long for precious memories to help me survive her future loss and I earnestly continue to pray for a loving mother (at least not so mean), but I have difficulty accepting that this may not ever actualize.
Despite all this lamenting, I believe I am holding up as well as can be expected. The extensive topics you have included here on this website are so useful with coping and understanding my anticipatory grief.
I am a very private person and this form of communication works best for me. Heartfelt Thank-You for your work and sharing of information & experiences.

I have a brother who is an addict. He has a blood infection and sepsis. He was hospitalized, but left the hospital on his own. He has no phone, there is no way to contact him. I am feeling such grief, because his condition is life threatening. I live with my mother, and she is also grieving. My worst fear is he is going to die, and we will not have closure. I am also feeling guilt because the last time he was here, he was being very difficult and I didn’t spend much time with him. The drugs he is on have turned him into a different person. He used to be funny, kind and a gentle soul. The drugs made him short tempered, and he has outbursts of anger. The day he left I said some harsh things to him, and I feel so bad. There is no way for me to apologize to him. I have no one to talk to. I am crying all the time, I feel so bad. I’m afraid he’s going to die and I will have my last memory of him weighing on my conscience. I don’t know how to handle this grief.

Hi Mandy, I revisit this site often…my eldest son is an addict and it helps me to read this article to some way justify, or at some point, understand what I am feeling and bring some normalcy to it. I don’t know if anything I say will resolve or help you but I can say I relate to what you are feeling in so many ways. I’ve often, as a mother, looked back and wondered what I could have done differently to change my son’s current state, no matter how many times I’m instructed not to do that, I still do. I think there will always be a level of guilt just because I’m a mother of a son who’s an addict. I am now to a point where I can play the different scenarios in my head without carrying the full weight of guilt. I’ve spent most part of the last three years trying to help my child in various ways..i.e. rehab, sober living, military..etc. and NONE of it worked…no matter what “I” did, nothing worked. I think it took me going to the ends of the earth to realize that it’s not what “I” can do or am willing to do, it’s what “HE” is going to do or willing to do . It didn’t faze my son that I spent every dollar I had to help him, or that I wasn’t sleeping because I worried so much for him or that our whole family was full of suffering over him… he didn’t care…or better yet..the drugs turned him into a heartless selfish person. He has said some very horrible things to all of us…but I know it’s not him, it is a result of his drug use. No amount of action we took, or money we spent, or pain we felt, was going to persuade him to stop using. I can’t imagine the relationship with a sibling being too far off from the bond a mother has with her child. We love them and want the best for them. I have two children and have also watched the affects my eldest and his addiction has had on my youngest. My youngest is hurting more on the inside than he is willing to show on the outside. We’ve had so many ups and downs with him, i.e. “Is this the time he wins to his addiction”, “Is this the last time he uses?” Each time we felt or asked those questions (and many more) we were let down with a devastating blow. I made a point to allow my youngest every bit of his feelings…if he was angry, I let him be angry, If he was sad, I let him be sad…I say “I let” I mean I didn’t discourage his feelings, I only stated that he should never stop loving his brother. It’s weird how it affected us, the first couple of times we were really hoping and when it didn’t happen we fell hard…I think we went into the next few “times” guarded; that may have alleviated some pain, at least in that very moment, but the pain deep down never released from us….I guess what I am trying to say is…release yourself from this guilt, it’s not you to carry the burden of this. The responsibility for all of this falls to your brother. Before you two can even visit about what was said out of anger and frustration, he must first deal with his addiction. He must first be humbled in his discretions before he will even begin to understand what he has put you through. Remember, he is not in his right mind, it has been altered..don’t hold on to this guilt…I know easier said than done. But for your peace of mind you have to let it go. I spend a majority of my time on my knees praying for my sons recovery. I will pray for you and your brother.

My name is Chasity andI’m 32 and I been very blessed in life I have never lost anyone who was close to me. Well my mom has copd and it is slowly killing her she has been on the ventilator 5 times in a month and a half and in the past 2 months she hasn’t stayed home but a.week without going back in the hospital on the ventilator and now she has pneumonia that is caused from the vent. Well today she signed a paper saying that they could not put her back on the ventilator I have hated seeing her suffer these last few months and I’m very grateful it hopefully is short I know some people wait watching there loved ones for months or yrs. I have been praying for God to take her I can’t stand watching her suffer. But at the same time I feel tons of guilt and I feel like I’m on a rollercoaster sometimes there is hope or I lie to myself and make myself believe there is hope and then the rest of the time I’m either pretending my life is fine and by the way I have completely isolated myself from.my whole family my husband and I are getting divorced after almost 11 yrs of marriage and were togeather since I was.13 but he was abusive . And I have broke down about three times like can’t breathe and hysterically crying as if she were dead already I feel guilty but I just want her to get well or God to take her my heart hurts so bad watching her so miserable and she has no quality of life at all anymore. I don’t go see her often it’s so hard seeing her in the shape she is in I don’t want to remember her sick like this I want to remember her the way she has been my whole life and I did apologize to mom and explained why I wasn’t coming that much she said she did not want me to remember her sick and told me it was ok can I get any advice I have never been through a loss I don’t know if I am doing the right thing or what I feel crazy bc I cry like she is already gone but I know it’s coming and in my heart I believe soon she keeps getting worse now she had to have five things of blood and. Don’t know why she is loosing it plus pneumonia and then. Her lungs are terrible always on oxygen and her oxygen still gets like 69 but it has dropped to 20 I don’t know what to do I pray but for some reason God won’t take her yet and I am trying my best not to question him but its hard

I’m 32 and I been very blessed in life I have never lost anyone who was close to me. Well my mom has copd and it is slowly killing her she has been on the ventilator 5 times in a month and a half and in the past 2 months she hasn’t stayed home but a.week without going back in the hospital on the ventilator and now she has pneumonia that is caused from the vent. Well today she signed a paper saying that they could not put her back on the ventilator I have hated seeing her suffer these last few months and I’m very grateful it hopefully is short I know some people wait watching there loved ones for months or yrs. I have been praying for God to take her I can’t stand watching her suffer. But at the same time I feel tons of guilt and I feel like I’m on a rollercoaster sometimes there is hope or I lie to myself and make myself believe there is hope and then the rest of the time I’m either pretending my life is fine and by the way I have completely isolated myself from.my whole family my husband and I are getting divorced after almost 11 yrs of marriage and were togeather since I was.13 but he was abusive . And I have broke down about three times like can’t breathe and hysterically crying as if she were dead already I feel guilty but I just want her to get well or God to take her my heart hurts so bad watching her so miserable and she has no quality of life at all anymore. I don’t go see her often it’s so hard seeing her in the shape she is in I don’t want to remember her sick like this I want to remember her the way she has been my whole life and I did apologize to mom and explained why I wasn’t coming that much she said she did not want me to remember her sick and told me it was ok can I get any advice I have never been through a loss I don’t know if I am doing the right thing or what I feel crazy bc I cry like she is already gone but I know it’s coming and in my heart I believe soon she keeps getting worse now she had to have five things of blood and. Don’t know why she is loosing it plus pneumonia and then. Her lungs are terrible always on oxygen and her oxygen still gets like 69 but it has dropped to 20 I don’t know what to do I pray but for some reason God won’t take her yet and I am trying my best not to question him but its hard

Hi christy, this is garyn i am going through a similar situation, it’s very very similar to this the only difference is that i am 21 and she is not my biological mother she is someone who has raised me as a child, please contact me on my mail id if you read this.

Hello. I just saw my dad after a year. He can’t even carve the turkey anymore. He has COPD as well. I don’t know how to deal with this anxiety about this. He was such a vibrant man, so intelligent and funny and wonderful. He still is wonderful. I know I will lose my mind. I keep thinking each Christmas will be the last, but I think this one will be. How does one cope. My coping skills were always drugs. I am terrified of using that as an excuse, but I don’t Know how to even anticipate anything like this. It’s like it’s shoved under the rug and not talked about, but I know everyone has to be thinking something similar. I am 48 and fell like a child. My parents have been my best friends my whole life. I am so lost. I feel like if I don’t start trying to grasp this now, I will go off the deep end, and my mom needs support too. Why do we have to face this in life? It’s not fair. I love him so much. How are you guys doing with your situations?

I was grateful to learn about anticipatory grief. My husband is in hospice care with three lung diseases and also has three dementias including Alzheimer’s. I had felt sad for so long and couldn’t understand the depth. A friend finally recognized it and shared her own experience as well as our hospice team has helped me. I’m grateful he doesn’t suffer the same pain as many cancer patients do, but watching him choke and become someone I don’t recognize is gut wrenching. I often feel so alone and isolated and have virtually no help. Even recently when his sister came to visit, she confided she was nervous to be left alone with him to allow me to be able to get out so while the visit was nice it didn’t give me any break. I’m 54-years-old and live like I’m 75. Some days I fight bitterness, but I love him with all my heart and am honored to care for him as I know he would me.

My father just passed at 92, after 10 months of decline – slow, and then more rapid – which my mother did not see. I spent a lot of the last year in hospital rooms, rehab facilities, and the ER with both parents, and driving them to appointments, shopping for them, etc.. My 88-year-old mother has early dementia, and now caregiving shifts over to her. She’s OK physically, but her grief for my father is crippling her right now. It’s hard to know what the future will be like for her.

I feel like I’ve been enveloped by the stress of caring for them, and by concern about how to manage their very different needs. (Nursing home? Assisted living? Visiting nurses?)

I don’t feel like I have a minute to deal with the loss of my father, because the need to care for my mother is so overwhelming. Or maybe I’ve been pre-emptively grieving my father for a year, so I don’t have any more grief to bring to his loss?

The biggest “symptom” I have right now is an extremely low tolerance for the normal back-and-forth drama in my friends’ lives: boyfriend fights, difficult transfers at work. I feel like I have no empathy and no patience to bring to these problems; it’s all I can do to get through my own day, and I have nothing to offer others. I know one of my friends is feeling annoyed by my inability to be a “listening ear” about her specific drama right now, and my gut reaction is anger that she would even expect me to be a caregiver when I’m dealing with my own deep stress.

I’m 70. My 47 yr old son is a cancer survivor from age 6. His whole head radiation treatment as a child cured him but has produced slow and severe accumulating adverse side effects. After all these years of worrying and caring for him intermittently he is now in a nursing home with a trake and a food tube and only has movement in head neck and one arm after having a bad stroke.

I’ve been severely heart broken since he was 6. That’s 41 years I’ve been grieving. I am very emotionally worn and have a very broken heart and honestly see no relief for either him or me until he passes. And then I wonder how much life I have left. And my two other children are so needy. I love all three of them very much but I’m afraid it is killing me or at least making me very emotionally sick and see no relief until I die. Don’t worry though because I’m not suicidal.

My mom was diagnosed with stage 4 Lung Cancer and I was her support team. She was/is my best friend and it hit me extremely hard. We had 71 days, from the time we found out, until she was gone. Her last 2 weeks were spent in Hospice and I can’t say enough nice things about all of them there. They were there for both of us. They could see me struggle, they knew I was grieving already, even before I did. I suffered from anxiety, still do, and the fear of what life would be like without her there. Anticipatory grief is very real, even if we don’t realize it at the time. It’s like it is setting our bodies up for what is to come.

My husband beat prostate cancer and melanoma, then got head and neck cancer and endured many surgeries and radiation over the past three years. In January he was told it was in both lungs, his neck, and his head, and nothing could be done. Two days later I was diagnosed with breast cancer, had surgery, and will need further treatment. We have each other, and old dog, and no other family. I don’t even care about my cancer, I just want to be present for my husband and not debilitated by treatment. He has Hospice care at home. All is on me, and I must be able to handle it all. I can’t eat, can’t sleep, and cry all the time. I just turned 70, and my oncologist does not even acknowledge my grief…even God seems far away…HELP!!!

I do not know what to say. Often doctors are poor at validating emotions and practical difficulties that come up with illnesses. Nurses and social workers have a much better understanding. I wish I could come around and just be there for you. I wish there is someone that is able to do that for you two. Did the doctor arrange any social worker or home visit nurse or similar for you as well (aside from services put in place for your husband). Things like household cleaning, meals, doing dishes, grocery shopping etc. if arranged by someone, can free up some energy for you to just be there and spend some quality time together with your husband. Big hugs. Do you have someone you could talk to, someone who would just listen, even if they are not able to arrange for any services? Gentle hugs and much love to you and your husband.

Helen–my husband has Parkinsons, has had it for 9 years and only in the past 12 months has it gotten worse. He is on hospice too, and they have been great providing a variety of resources, some have helped a bit, some not so much. I am still working–he’s 70, I’m 61–part time, and have a caregiver with him 30 hours a week, M-F. With PD, it’s a constant up-and-down roller coaster–it’s a horrible disease, that slowly destroys the brain, and ultimately the rest of the body. He’s still ambulatory with a walker, takes his meds, eats pretty well most of the time, but he can be incontinent and basically bedridden some days. Bottom line–YOU ARE NOT ALONE. I have found that through this my faith in God has deepened and strengthened, and even on the really tough days I’m reading scripture and on my knees, if only asking for the strength to get through the next couple of hours. I can be at work, checking email, and suddenly I’m in tears…it’s just him and me, an old dog, and 3 cats…so you see, I’m right there with you. Sometimes I just have to excuse myself, say I need a moment, and go sit in my car until I’m able to face things again. I don’t think it gets easier…but we have to find whatever we can to help us as caregivers get through it. I also see a counselor weekly…on my own nickel…I advise it, urge you to find someone you can connect with who can help you sort through all the emotions and stresses…make whatever payment arrangements you need to make if insurance doesn’t cover it, but that’s the best piece of “advice” I can offer you. Take good care.

I’m so sorry you are going through so much and your husband!! I am a caregiver of 20 years for my father and let me tell you I was so relieved to learn about this kind of grief. Please keep your heart full and don’t give up. Psalms 83:18 says God’s name. Pray to him he will comfort you.

I will continue to spread your mighty work you did for me. i don’t know how best i can express your work done for me but only to say thank a big thank you, for removing shame from my shoulder and now i am totally whole again after 10years of battling with HSV 1&2 Disease. i never believe my life will be back to me ever again. but you used your blessed Herbal medicine to cure me and if only the world can see and witness your mighty work also on their life. i am a carrier of your abundant work Dr Akuna and i will never forget you, oh i’m glad to have contacted you for help and with a speed of light. you prepared my herbal medicine and i received it and now it is a miraculous testimony for my life. i will forever and ever praise and worship your mighty Name Great Dr Akuna. the honest and true man i have ever worked with and that didn’t fail me. if you are reading this right please remove every doubt from your mind and contact this powerful Dr Akuna. ON ANY TYPES OF DISEASE THAT YOU MAY BE GOING THROUGH. HE IS WAITING TO HELP GET CURED. Only if you can contact Him right away on his email:[email protected] or you can contact his Mobile line:+23454625070 ……

I will continue to spread your mighty work you did for me. i don’t know how best i can express your work done for me but only to say thank a big thank you, for removing shame from my shoulder and now i am totally whole again after 10years of battling with HSV 1&2 Disease. i never believe my life will be back to me ever again. but you used your blessed Herbal medicine to cure me and if only the world can see and witness your mighty work also on their life. i am a carrier of your abundant work Dr Akuna and i will never forget you, oh i’m glad to have contacted you for help and with a speed of light. you prepared my herbal medicine and i received it and now it is a miraculous testimony for my life. i will forever and ever praise and worship your mighty Name Great Dr Akuna. the honest and true man i have ever worked with and that didn’t fail me. if you are reading this right please remove every doubt from your mind and contact this powerful Dr Akuna. ON ANY TYPES OF DISEASE THAT YOU MAY BE GOING THROUGH. HE IS WAITING TO HELP GET CURED. Only if you can contact Him right away on his email:[email protected] or you can contact his Mobile line:+23454625070

Double bubble. I am in a double bubble. My mom died unexpectedly 3 months ago today….reason still tbd. My dad started Hospice a week ago. I was thinking I am in anticipatory grief, but I don’t think I have healed from my mom. My brother is my dad’s main caregiver and keeps stressing for me to work. He is extremely bossy for the younger sibling. As a single mom, I feel asking for help , even financially might be ok. Afterall, my brother won’t close my mom’s bank account….and I don’t want to deal with two at the same time.

My dad was diagnosed with stage 4 prostate cancer back in 2014, before I was to get married. This man hasn’t done a good job of taking care of himself, and always hated and avoided going to the doctor. Both my parents are toxic people (guess this makes it a little bit more complicated). However, just last week, my dad was rushed to the hospital from what he thought was a heart attack. It is the cancer. The doctors told him and my mom that this part of the journey is coming to an end and he may only have weeks to maybe a month. They brought him home last week and set up hospice. For the first time, I saw regret. He regretted not going to the doctor years ago when he thought he was sick. I have been angry and crying, and feeling rather horrible at times because of wishing this was already over. However, my parents mistreated me and my siblings, so it is making this harder in some ways. I do visit and call more, but I still have to keep boundaries and keep my emotional guard up because regardless of this current situation, my parents still act the same (well, more so my mom, but my dad is finally showing some signs of compassion towards another human being). Anticipatory grief really really really sucks. :'(

Im 17 and my mum has stage 4 metastatic breast cancer that is now in her bones. It’s been 9 months since her diagnosis, the diagnosis was 1 month before my AS Level exams which led to me not doing any work at all as i could never concentrate and although i passed everything the results were awful compared to what id hoped for, id burst into tears countless times a day at the thought of everything that was going on in my life and i’d never knew what I had been feeling all this time until now. I grieve the loss of my mum everyday although she is still here in body her bubbly, joking personality, the ability to have cuddles with me, walks with me to my grandma’s house, doing the food shop, making food, the thought of her not seeing me finish university or having my first proper job, her never seeing my first born child, never attending my wedding. Looking at her lying there and barely eating, loosing over 3 stone, sleeping every single day of the limited days she has left on this earth hurts my soul so much sometimes i can honestly say i feel the hurt in every part of my body it’s like a constant aching. I look around me and it seems like i’m hurting so much more than everyone else but then i realise that we’re all just suffering in silence, right?. I’ve self harmed in the past and recently i’ve thought about it so often(around 3 times a week) and now thoughts of suicide always come to mind… How can i live in such a cruel world without the most beautiful person in my life, my mum? I love her so much words can’t describe my heart is literally broken.. I always think.. Why me, im 17, most people my age their biggest problems in life are how their boyfriend cheated on them or how their parents refused to get them mcdonalds. I pray often for answers because i feel like maybe God honestly hates me but i know these are all irrational thoughts and that people have it worse and hurting myself is only going to make people who are already hurting hurt even more.. i need to treasure the time i have left with my mum. I’ve never shared these thoughts with anyone before except my bestfriend (who is the most amazing person and i dont think i’d be here today without her) as I don’t trust a single person in my life.. Life can honestly change in the blink of an eye and i feel guilty for every single second i ever took for granted before April 2015. I believe this whole rough patch of my teenage years will only make me a stronger, better person in the future.. Im just in so much pain right now y’know?.. 🙁

Very dear one, please contact a guidance counsellor, church, or child welfare or hospice facility and ask for help of a therapist to talk with. They will help you get through this, and understand that all you’re feeling is normal. Do it now, and no self harming, ok? Sending love from California

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I would just like to share that it is not only our human family and friends who can cause us to feel this way. Our animal companions can be so close to us also and will often face illness and death long before us.
My Golden Retriever Barley is only 10 years old. Many live to be 14 and that is what I had mentally prepared myself for. But he is showing weakness in his hind quarters and, though he is still quite alert and happy and still goes for a daily walk, I know I must be seeing his ageing and eventual death much sooner than I had prepared for.
I feel cheated. His weakness came on in a course of a few months. He can no longer run for a ball and it creases me to watch other dogs running happily on the beach when I know he cannot. It was not meant to happen like this; not yet.
And yet Barley is showing me that whatever I may feel about this, he lives from day to day and moment to moment. If he fails to walk up a step, he waits a while and has another go. He still rolls around in the woods and sniffs and investigates along the way. He doesn’t spend a single moment worrying about how it will be when he can no longer walk let alone run. Live in the moment; every moment.
And so we spend as much quality time together as we can. I have moved other interests and commitments around his needs and withdrawn from some activities so that we can spend time together, experience training together (he is a nose dog) and so he can enjoy the benefits of hydrotherapy, which helps him to maintain muscle and mobility.
I will miss him when he passes. I miss him now. But he is teaching me to live each moment as it is given and not bark at shadows – until our paths part.

I found my way to this site researching anticipatory grief — I’ll lose my father to cancer any day now. Your story of Barley actually made me smile. I lost my dear black Lab, Riley, in June, after 14 loyal years together. It’s been three months since she’s been gone and I still expect her there next to me. I now recognize I had anticipatory grief with her, too.

Anticipatory grief is a powerful emotion and I never even knew it had a name. I’m going to try to think of it as gratitude–advance awareness of all the gifts we are given.

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I lost my nan almost 2 years ago come April, and despite not knowing at the time she was my pride and joy. We’d dance for hours together, and she’d always tickle my toes when I was younger. Now almost 16, I still keep memories of her in my mind. She’s always with me. No matter what. Everyone says I used to look like her, and I appreciate it as she was and still is one of my favourite people to ever exist. She was incredible. Lived with dementia for 13 years, although she didn’t always remember me, she showed love.
So, after all this time past her death, why am I still grieving and in worry that I’ll be alone in the future? I always get emotionally depressed when I think about having the ‘coffin closed on you’, and worried about my families lives. I have two brothers, one elder and one younger, and I’m just worried about my parents 24/7 and how I’m eventually going to be closing the coffin to them. I cried for an hour straight earlier, and I just can’t stop. 🙁

Exactly that.. I was already grieving when my mum stayed in appalic state after stroke and heart problem and 40 min resuscitation. .. she could talk, walk… was locked inside but I saw she understood me and listened to me… but she couldnt do anything and I couldn’t either… few hours before resuscitation action which left her in this state, she told me that she s gonna die that night, that was dying she knew that and that she loved me… she said all that and then it happened. .. she started grieving and me as well… after few months with no hope and seeing her suffering, I know that she still knew and me to that it will have to end… and I was already grieving my mum. .. missing everything about her before it all happened. .. she did too I could see that in her eyes when I talked to her…

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My mom is 80 years old. She was diagnosed with Alzheimer’s disease about 6 months ago. She is in the early stages and only has problems with short-term memory. She broke her hip last month and after surgery went into a nursing home for rehab. My sister has medical POI and I am the alternate. I have financial POA and my sister is the alternate. My mother also has degenerative bone disease and will never walk without a walker or wheelchair. I want to bring my mom home to live with me. My sister says, since she has the right to make medical decisions, I cannot remove my mom from the nursing home. Can I sign my mom out if I am the alternate medical POI for her? Is my sister really the only one who can legally remove my mom from the nursing home? Can mom sign herself out even though she’s diagnosed with Alzheimer’s disease?
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I’ve been dealing with anticipatory grief for 10 years now . I didn’t even know there was a name for it, just some crazy behavior – on my part. No one really talks about it… and so we don’t know that it is normal to feel what we feel and cope as best we know how.

Thanks for this great resource. I am sure it will be very helpful as we continue down this road.

My father was diagnosed with Motor Neurone Disease (ALS) a year ago, and I struggle with this everyday. I’m lucky enough to have counselling provided to me, but I still feel the anger and the loss everyday – watching the physical changes and frustration dad feels. My problem is that he has a genetic type, and now (before I’ve even decided to be tested or not- there is no 100% with genetic MND, and no treatment at all available yet) I’m almost grieving my own disease and the children I don’t yet have. It does crazy things to you…

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My name is Karina Morales ,i want to shout a very big thanks to Priestess Kukuye for helping me to get pregnant and now i have a baby girl and i am heavy with a boy inside of me. i was married for 9 years and i couldn’t get pregnant whenever i take in it will flow out, i became very confused and frustrated until a friend in my office introduced me to Priestess Kukuye who helped me conceive with her womb opening oil. She gave me just oil from his temple to drink and today i am a happy mother. i am very grateful to her. If your out there and still finding it difficult to get pregnant or when you get pregnant it doesn’t stay contact him, i assure you that your pregnancy problem will be solved by her. Email her through [email protected]

My wife was diagnosed with Vascular disease, and she has diabetes. She has had one leg amputated below the knee, and half of her other foot. She is forgoing dialysis as well. Her Dr. says that her life expectancy is about 1 to 2 years. We have an 11Year old daughter and the thought of her losing her mother scares me. I have dealt with many deaths and losses in my life but none made me feel the way I do now. And she’s still here! I cry more now than I ever have in my life. As I care for my wife and my daughter I feel very lonely. I have dived into my job and worked more to help keep my mind occupied and not feel so sad. My wife hasn’t been home in 6 months and my daughter misses her a lot as well. I know this sounds like its all about me, we’ll, I’m venting. I don’t talk to much about it. Also, if there is anyone out there that is dealing with the same thing, I hope it helps to realize that you are not the only one. Feel free to contact me through this forum and we could talk. Help each other out. Please pray for me and my family as I will pray for all of you.

Thank you for this article, it has helped me understand so much of my experience of my mum dying. She too had a stroke and I believe I began grieving before she died. At the funeral I felt relief and peace, relief that neither she nor I are suffering any longer and peace that she is (I believe) back with my dad who died 8 years ago and she was never quite the same after wards. But I feel so guilty for not being heartbroken. Over this last devastating year I watched her go from an independent person, to a disabled and incontinent shadow of herself. Yes, there were glimpses of the old mum but I feel as if I lost her last year. I’ve cried so many tears, expressed anger and frustration over the year that the funeral could not bring forth any more sorrow. My sister was very upset, but she lives away and has little idea of the reality of the responsibility that I felt and the distress of seeing the daily suffering of my mum. I saw mum every day she was in hospital and then, a nursing home as I could not care for her, her needs were so high. When she was healthy I saw my mum several times a week, whereas my sister it was a once a year visit and irregular phone calls, so her life hardly changes wit h mum’s passing, but mine will change drastically. This doe snot men, of course that I love my mum more or that my sister doesn’t care, we just lead different lives, but I worry she thinks I am hard hearted and indifferent as I can’t seem to cry now. At the funeral all my other relatives could see she was so upset and I felt they were judging me as I wasn’t crying as much as she was. Over and over I’m getting asked, how do you feel? I’m not giving a truthful answer–I feel ashamed I’m relieved and can’t really explain that I’ve done most of my grieving already. I almost feel happy for my mum that she no longer suffers. I feel comforted to read this thread as now I do not feel so much like there is something wrong with me.

I just want to say thank you. I had been told by someone briefly a while back that what I have been experiencing was grief for my mum even though she is still alive. When I tried to explain to my friends and my partner that I thought this was why I was the way I was they didn’t really get it which made me feel incredibly alone, and also like there was something wrong with me. Reading this makes me feel better, it makes me feel more ‘acceptable’. My mum has been fighting cancer for 16 years, I have spent over half my life in a state that ranges from varying levels of anxiety, low mood, anger, sadness. Looking back always when there was a change in treatment, in progression of her cancer. Most recently a couple of days ago we were told that the treatment she is having is not making any difference and she has a couple of months left to live. It seems like an even bigger shock as it feels like this war has been raging for such a long time and she and we have been fighting it so hard for such a long time it doesn’t seem fair and it seems shocking even though I guess after having it for 16 years you would expect this to be the case. Nothing ever prepares you for being told someone you love has a certain amount of time to live. She even had her kidneys and bladder removed a year and a half ago to get rid of the cancer, with the hope of being clear long enough to get a transplant. However it’s now left her in a position where she has to have dialysis every other day for 4 hours in a hospital and soon, she won’t be able to get to dialysis because the cancer will make her so tired, which is a really weird feeling. I feel so sad, I fear so much of how I will cope when she’s gone, to not have mum’s advice, or her chats, or her funny quirks or her amazing skills that only she has. I keep hoping that it’s just a bad dream, I just feel such an overwhelming sadness for her and for us. I read this post this morning and passed on the information to my dad and my brother just so they know it’s here and that anticipatory grief is real and very normal and that we shouldn’t feel ashamed by it. I hope they and many other people who are going through something like this find this page just like I did, at exactly the right time. I even started journalling today. Thank you.

Thank you for this entire site… I have been dealing with all this sadness and frustration since Nov 2013. That’s when my beautiful, vibrant, independent Mom had 2 strokes right in front of me. I am an only child, I have 4 children, ages 23, 19, 17, and 10. My mom has lived with me for the past 10 years, and my 23 year old daughter dropped out of college to be the primary caregiver to her Grandma so I could still work fulltime. Along with all the feelings of sadness that keep me in pain 24 hours a day, I have enormous guilt because my daughter who worked so hard to get a scholarship, lost it, because if you aren’t in school fulltime, they tae your scholarship away. Now her friends are graduating, and she has become a hermit, will not go anywhere or talk to any of her friends. The whole family has changed. My mom is in a wheelchair now, she cannot feel her left side, she is depressed, she doesn’t remember when I was little too much. My dad passed away 16 years ago this May of Liver Cancer, which I got to experience up close and personal with a newborn in my arms, nursing in a hospice, I didnt have the support of my children back then, as they were babies themselves. Now, I have their support, and feel guilty 24/7, because my mom cannot do what she used to, cannot enjoy her independence, I find no joy in my life now. Even watching my son graduate last year was more a chore than a joy. Worrying about my mom, could he see him from where she had to it, was she cold, should I be up there or down here where I can take his picture…? My life has become a series of doubts… I used to be very happy go lucky. My mom has always been my best friend. Now, I feel this immense loss, when she is still here, but her personality has changed so much. I weep while I type this, I feel guilty that instead of enjoying the fact she is still here, I am crying because I miss her. She has always been my goto for advice. Now I have no goto. Her reasoning has become short, she is on so much medication. I have gained 70 lbs since her stroke, I have aged so much, my entire body hurts all the time, I have severe migraines, I see a therapist every week. I don’t think its helping me with this… SO thank you…I needed to know that what I feel is normal…to some extent.

Been going through this process for over 2 years now with my 85 year-old mom. She was the paragon of health for most of her life; has outlived all but 2 (the youngest) of her 10 siblings, and has reached the highest age in several generations of her family. She began having TIAs several years ago, but we didn’t realize this, nor the extent of damage due to her amazing ability to compensate. That is, until 2 years ago when she wound up in the ER twice in one week. Since then some pieces have been coming together in the puzzle of some of her behaviors in the past seven years. Minor car accidents, inability to balance her checkbook, strange out of character (seemingly) decisions on a personal level. Since the events of 2 years ago I feel as though I have been pre-grieving her. I have spent weeks, days, and hours with her, discussing her wishes for the rest of her life, after death, hopes and asking if she has fears of dying. I feel fortunate for this time with her, but that doesn’t lessen its impact on my day-to-day feelings. I start when the phone rings, especially after 9 pm or before 7 am, I feel guilty that I sometimes am so exhausted in untangling some of the messes she makes with telephone solicitors and scammers (true evil, vultures in our society) that I wish it all would just stop. Some therapists have said you cannot anticipate grief. But I know you can. Thank you for this article and a place to express feelings.

I recently lost my soulmate/husband of over 32 yrs to metastatic breast cancer. He went through 4 yrs of treatment. This article was helpful to me as I ride the emotional roller coaster of grieving for my precious love. Going through his boxes containing his hobby related things, in addition to his childhood mementos that I’m seeing for the first time, bring on the tears. Seems like there’s no end to the crying. Wondering when I will be able to look at his photos or memory boxes that I will make with no more tears. Being overly sentimental, I imagine this will be a long process. Thank you for the articles & comments from readers. I appreciate all the info. I can get.

Omg, I thought I was so wrong getting relieved when my son died. He was a drug addict and I was literally running almost everyday for him, to him, whatever the case may be. I was so mentally and physically exhausted. Though I didn’t wish for him to die in any way shape or form because my youngest son had just died two years prior, I was so so tired. I was just overwhelmed by my son’s life and addiction that I had sometimes wondered if it would be easier if he were gone. Than I would cry and hate myself for even the thought. But I was just so tired. And he just didn’t care. Didn’t care how I felt, how he was hurting me or anyone else for that fact. He consumed me in every way possible. I am a recovering addict that choose to get out of that way of life. He had me living that life and I wasn’t even getting to use the drugs. I prayed everyday that something would give. That he would finally get it. Well something gave. I got that unwanted call that no parent EVER wants to get. Twice! But I knew, I knew this call was coming. I just didn’t know when. Than my whole life stopped. The running stopped, the phone calls, the money problems, the worrying, EVERYTHING. In a way I felt relieved. But than I felt so freaking bad for feeling that way. But you have to know that I couldn’t eat, sleep, relax….EVER. in the past several years. I am so relieved to know that this is normal. I thought I was the only one that felt this was. I thank God it’s normal. Thank you for taking the time to read my story.

Thank you so much. I experienced this prior to the death of my husband. I had no idea other people dealt with this or that there was a name for it. Reading this helped me see what I experienced was normal & acceptable. It also helped me stop feeling guilty about the slight sense of relief I had after he died.

I have learn so much reading articles like this about grief. 7.5 years ago my partner of 20 years was diagnosed with terminal brain cancer and gave him 12-18 months to live. I was the mother of a 5 year old boy and a teacher. I took some time off work to care for Joe. I did not know about anticipatory grief…all I could think about about was Joe is dead…the dead man walking….I felt horrible. I had such a difficult time to be physically close to him. I still took care of him but I felt guilty of not being able to be close to him physically. My son took over that task! Joe gave it all to fight this horrible monster but after 18 months he passed away. It will be 6 years in 2 days since his death…I have moved away from the big city and moved to a small community where it is much easier to raise a child as a single parent. Sam is now 13 and an amazing young man. Joe would be proud of us. I have learn not to be so hard on myself…watching your partner suffer and die can bring you into an unknown sea of emotions that are alien to you. I am still seeing a counsellor to help me sort out emotions that are too hard for me to tackle on my own…and that is ok
Thank for this blog

One of my oldest and closest friends is dying of lung cancer, at age 48. It had spread to his brain and spine, and treatment was stopped a few weeks ago. His decline has been very quick, and he’s progressed to a level of dementia where he is easily confused and agitated. To see this tough, sharp ex-Marine reduced to a shell of his former self is devastating. I visited last week and he begged me to take him home. He stopped eating over the weekend, and since he has an advance directive, he will be receiving comfort measures only.

He’s receiving phenomenal care from his partner and the medical facility (where she happens to work.) We have a large group of friends, so that support network is there. I wish I didn’t have this heavy feeling in my chest and lump in my throat, and I feel selfish for articulating that, though I know it’s normal. Thanks for this blog, and for reading.

I am experiencing anticipatory grief. My sister has stage IV metastatic breast cancer that has spread everywhere. I go through sudden times of overwhelming emotion. After I regain control, I am fine for days, weeks or even months. One of these emotional episodes happened in my sister’s presence and she got offended. She wants only positivity around her. I tried explaining that people being upset is actually a positive because it shows how much they care about her. So, I hide my emotions around her. It is so hard going through this. I kept hoping it would get easier over time. Two years has passed and I am still having the same bouts of emotion randomly. I feel guilt for feeling grief when she is not gone. I feel helpless.

Carlie, I’m sorry you’re going through this. My sister had stage II breast cancer a few years ago. We are very different so it was hard at first to find the right balance when interacting with her. But in the end, I think it made us closer. I found that I expressed my emotions best when I did things to help her – accompany her to treatments, run errands – rather than say things, if that makes any sense.

My mother-in-law passed away a month ago after 17 years in nursing homes. Her body was a prison to her due to crippling RA, cancer, and strokes, but her mind and personality were intact until about 5 months before her death. My brother has multiple chronic conditions that have worsened severely in the last few years and is now in hospice care. He was born with Down’s and a multitude of congenital defects and is nonverbal other than able to say “bye”. Doctors predicted he would not live past childhood, but he is now 42. Unfortunately, he is also now totally bedfast, swollen, too weak to even sit upright on his own, bowel and bladder incontinent, and his skin is now breaking down all over his body from poor circulation creating open ulcers. He moans and cries at times, unable to communicate what hurts or how he feels. At his last hospital stay a month ago, we were told his heart, lungs, and kidneys are in the process of shutting down. I’m 44 and have watched him suffer to varying degrees his whole life and grew up with my parents explaining that his death was expected anytime. But now his suffering has reached a new depth, and I feel that I am slowly dying inside along with him. I lay awake at night and can’t sleep thinking about what pain he is feeling and what he may be thinking about or needing. Even with all his disabilities and inability to communicate, he and I share a deep emotional bond. As he has sharply declined over the last few years, I’ve found myself praying that the Lord would take him on home instead of keeping him here and allowing him to suffer more, which in turn has caused me to feel tremendous guilt. I find myself teetering between rage (as to why he has all these conditions that the doctors don’t know how to treat or how to ease his suffering) and depression (helplessness, sadness, emptiness). As I read your article, I realized I have lived my life in some degree of anticipatory grief ever since I became old enough to comprehend my brother’s terminal prognosis but now I believe it is primarily the anticipatory grief that has ramped up its intensity recently and is creating emotional problems for me that are affecting my other relationships as well as my work and daily living. I also realize that I haven’t even begun to grieve for my mother-in-law yet and probably haven’t been as emotionally supportive to my husband with the loss of his mom, because of my brother’s immediate needs being my primary focus. I feel most people just don’t understand the situation or the relationship dynamics and simply lack compassion. I’ve been judged by some about why I haven’t expressed more grief for my mother-in-law and judged by others for expressing too much emotion about my brother’s condition. Thank you for sharing your insight and experience.

I’m sitting in my room 5 months after my mom passed. I’m a doctor and had to endure the pain of knowing her prognosis as it changed from day to day. She was being managed where I worked. One day I went to see her before work to let her know I’d come by later because I was running late…she turned and mumbled that she understood, when I came back later that day I knew she wouldn’t make it to the following morning. I had already started to call my uncle to tell him to prepare. Panic attack! First ever panic attack…and so I grieved her loss. The next morning, my colleague called….I was dangerously calm and I stayed that way for about 2 months. It helped grieving before hand, but nobody told me about the delayed grief I would go through from time to time months later.

i am so glad i came across this website with recent events hitting an all time low things have got me feeling confused scared and lost and just reading a few posts and podcasts , have made me feel a little less crazy which i was starting feel more and more so thank you , i know i was worried about both my parents getting sicker over the years but the last 8 years have been a roller coster of ups and downs and i wish i had asked for help while dealing with caring for them both and also knowing what would eventually happen because i feel, i wasn’t always the best care giver i could have been letting the inevitable cloud my happiness of just making the most of the time together while they were here , i feel even though i knew they were both very ill and both getting a lot worse with frequent hospital visits and i now see by reading this article, in a way i was definitely grieving all i was going to lose and what i had lost all ready .. i could have dealt with it so much better than i did …but the shock of them both passing away hours apart have made me feel so confused.. my mum and dad both passed away 18 /5 /2014 my dad who had fort ms for 30 years passed away from cancer related problems but it was respiratory problems that took his life, my mum who had lots of health problems including heart also passed because she couldn’t breath properly due to COPD / emphysema which she was on oxygen for all the time , but even so what was so hard was she wasn’t ill at the time she was quite well in fact in terms of how she was feeling and looking no chest infection etc , but as soon as my dad was ill and was in hospital a few days then put on life support she could not cope , 3 days later she was in hospital too, then few days later passed away, my mum passed first literally of a broken heart and dad 2 hours after ….i feel like what i was excepting all of a sudden happened, but i was not ready to lose them and not together (even though it was nicer in the long run due to mum not being well either) but i guess it all happened so fast , i thought i would have been ready for it , when i defiantly was not and now nearly 2 years on i feel more lost than ever … so thanks for posting this article and all the others i feel like it might be the life line i need, right now, i had so many expectations of grief and how it would go when in reality it doesn’t happen like you think at all , so much of what you write makes sense because its not tailored to fit how you should feel, what you should feel and when you should feel …its how you may feel and theres no right or wrong so thank you for being different, thank you for creating a place where you feel you aren’t crazy , you aren’t grieving to long , you aren’t wrong, you aren’t being silly your just grieving in your way and that could be any dam way, because grief is grief no matter the tittle so thank you Lista and Eleonar xx

I’m so sorry for all the many painful things you have been through and continue to grieve. You are very welcome for the site and I’m so glad that the message of grieving your own way resonates with you because it is 100% true! Hang in there and let us know if we can ever address any specific questions you may have.

Thank you for writing about this. I am 46 yrs old. Within the past six months, my husband was diagnosed with a terminal illness. He may have 4 yrs. He may have 10 yrs. It’s hard to know for sure. Treatments for his condition are being developed and improved all the time. As grounded as we have always been in the truth that the future is always unknowable, it was a blow to learn that we certainly won’t share the joys of grandchildren. We won’t experience our dream of living in Europe for two years when he retired. We won’t hike anymore. We won’t do any of the things we hoped to and won’t be able to carry on with most of our usual pursuits.
In the meantime, we have to live day to day knowing that his immune system is compromised by his medications, that something could happen to me (which would be disastrous), and that I am going to face what is likely to be a long life without him.
It’s almost impossible to find anyone to speak to who doesn’t immediately exhort me to adopt a positive attitude, take care of myself, or who doesn’t try to pretend that he isn’t going to really, actually, die. I suppose most people are simply unwilling to contemplate death, or to extend real compassion–rather than sympathy–which requires the capacity to tolerate unpleasant feelings.
I’m relieved to know there’s a name for what I’ve been feeling.

Thank you so much for your posting. I have never heard of grieving before a death, but I knew I was. I know and my mom knows I have been the best daughter that I could be. I love my parents dearly and would do anything for them. Mom has stage 4 breast cancer that has spread to her lungs and her brain. The mets in the brain is pressing on the nerve which is causing tremors and loss of use in her legs. This is such a sad situation. Her peaks and valleys are up and down, then not as high and a little lower. I guess I feel like there might be something I might regret not saying to mom while I can. It’s so hard for me to explain. But I do have an appt next week with a counselor. I’m glad I’m not the only one that feels this way.

Im so glad I found this page. My fiancee has late stage cancer. We are at the point where the chemo he had been getting up until recently hasn’t worked. We are awaiting news to see if he qualifies for a study drug but this just buys him time perhaps. This is his third time with cancer, and this time its ugly and mentally and physically draining. Going into the treatment I had the mentality of hoping for the best outcome but expecting the worst. I knew he could not be cure so the hope was in just making sure things havent spread.Since around the new year all I do is cry, I dont eat, I dont sleep, and other days I sleep all day. Im also seriously forgetful. IVe gone into stores and left the car running and the door hanging wide open, Ive left the stove on,left the shower running when Im done–its so out of character for me. Im also very socially isolated as if Im in a bubble with just me and my fiancee. In front of him Im smiling, strong, and in control. I clean the house, do his shopping, answer his questions as best I can. Once I leave I break down. My family doesnt understand Nobody calls to see how I am or if I need anything, make a simple meal would be nice, or help with the many things I still need to take care of with my daughter (im a single mom). I seriously considered putting myself in an inpatient mental health setting because I have become so consumed with losing him I feel I have forgotten how to live. Some people are very insensitive when I ask if I can just talk. someone told me what good would it do when the inevidable will happen anyhow. Im confused, lost and overwhelmed with grief. I think Im also grieving what our relationship once was…we were preparing to get married. I was connected to a therapist by a hospice social worker as she said she was concerned about my level of depression. Ive lost a ton of weight as well. I start seeing her next week. I really feel as if im losing my mind. Im more at ease learing others have felt this same way. Thank you for this site.

I can relate to so much of this. I lived in a state similar to the one you describe while caring for my mom, who happens to be my best friend. She survived her cancer for a little more than 3.5 years (a long time for the kind she had) and I was grieving since the day I found out the diagnosis. I’m still in the state you describe (lost her 2 months ago). I just came from a therapy session with a hospice counselor and it does help. Seeing her is very helpful; I also went to a support group the hospice offers which might help you as well. There are many books to read that help as well. I’m also totally isolated so these groups are a good way to meet people that get it. You might see if there’s a Wellness Community in your area; they have support groups as well.

This post is for SC. My mom just died one month ago from stage 4 brain cancer also. I have been her live-in caregiver for over 3.5 years (yes, she beat the odds). I have so many similar feelings as you in terms of anticipatory grief. I only learned that this existed towards the end. But I know that since the day I learned of the terminal diagnosis, I’ve been grieving. I felt like I was walking around with a bomb attached to my chest, not knowing when it was going to go off. Living in constant fear, anxiety & depression. All my life losing my mom was my biggest fear; we have always been extremely close. Seeing her deteriorate was hard, especially the very end. Now I’m going insane because I haven’t lost it totally crying, screaming, all the things I’ve expected to happen. I don’t know if it’s because I’m still in shock and it hasn’t hit me or if I’ve done the majority of grieving already. Or maybe seeing her out of the condition she was in plays a role. I don’t know. It’s bothering me though. But I do know now that I have been grieving for nearly 4 years; the fear of losing mom, the many losses she endured, watching her change/suffer, the loss of my own independence, the loss of the relationship she and I used to enjoy before she was ill, and on and on. It’s really bothering me; how I seem so numb right now. Maybe it’s too painful to even acknowledge and I’m in shock or suppressing the pain. The experience was so traumatic, especially the last few months.

I am so sorry guys about your losses… My grandma got very sick. I was really worried about her. She drank medicines but she wasnt getting better. So her best friend visited her really often and helped her clean the house, cook etc. She was getting worse and worse. My mom was super worried and me as well. So her friend called a doctor. Doctor said that she needs to go to hospital. They put her in hospital. My mom was calling her really often and she seemed getting better until this happened. As usual my mom was calling her as always. She called her once. My grandmother sounded fine. Mom called her second time. She picked the phone but didnt answer. Mom got really worried. 20 mins later grandma’s friend called and said that she died… I didn’t know because I was at school. I came from school and my mom told me. I started screaming anr crying.. Since that moment im crying… I cannot calm down. I see her everywhere. I dream of her at night. I have serious depression. The worst thing is,.my parents are away to Russia. This is where im from and where my granny died… We live in Spain. I have to stay here cause of school. I’m never gonna see granny again… Never… I dont know what can I do to calm down. I always tuink about her. I know , most people are gonna say “think about happy memories with her” but like it doesn’t help. It makes me feel worse in fact. Because you realise that the person you loved is gone… forever… My grandma lived very hard life but she didnt deserve that… :'(
I will always love her… Always…

Trust me when I say that I can completely relate to your frustration and anger with your father. I went through anticipatory grief a year and two months before my mom passed away in March of 2015. The day before she passed away I was consumed with so much fear, anxiety, panic attack, depression, shock, denial, and grief that I treated my mother badly, was verbally abusive to her saying things to her I now have to live with so much regret, remorse, guilt that I only punish myself, will not forgive myself for how horrible I treated her for years, especially at the end only because I felt a strong willed woman in my life was giving up the fight and on wanting to live her life. Thank God on her death bed I was able to make amends with her, apologize, tell her I loved her with all of my heart, asked her for her forgiveness for everything I had done wrong to her throughout our lives together, etc. If I had not said these things to my mother I would not be able to live with myself right now and would have definitely have felt much worse than I am still feeling. My mother was a breast cancer survivor for seven years then it returned and took her life the second time. I am consumed with guilt, remorse, regret, sadness, heart ache, depression and cry all of the time for her because the grief and sorrow are unbearable and I miss her so much. I was my mother’s care giver when the cancer returned, it was a very difficult time for me and I felt very alone without anyone that understood in my family what I was dealing with or going through. Learn from my mistakes. As hard as it is and not fair to you still be there for your father because you are all he has for support and help. Do all you can for him while he is still alive and appreciate every moment with him not taking anything for granted. Let him know how much you love him and accept that he is stubborn and hard headed and will not do your will but his own, you cannot change this of him. Do all you can for him while he is alive so you will not have to deal with everything I am dealing with on top of the grief and sorrow because I was not patient, compassionate, understanding, empathetic, apathetic, respectful and loving that last year and two months I had to make up what I had messed up with my mother all of those past years. My heart goes out to you, hang in there, you can do it, you are stronger than you can imagine, be there for him he needs your love, support, help, patience and compassion. He might be in denial that his health is deteriorating, not all of us have common sense of these things and see them for what they really are when they are happening to us with our health. I hope some of my advise, suggestions help you with your current situation with your father. Take care.

I am going through this all at the minute, within the last 8 weeks my very independent granny had two mini strokes which she actually faired out quite well against, however had we not gone against her GP and taken her on to a&e (even though the go wanted to arrange a scan for two weeks! ) we would never have discovered what we did. Granny had scans to confirm the strokes and in that process tumours were discovered in her lungs her spine and spleen. She was out shopping a couple of days before and gardening which is why this is such a shock! Her cancer had started in her lungs and then metastasised to her bones and vertebrae in her spine and her spleen her outlook is and always will be poor but she had treatment options at least to help with infections and pain, not to cure her! . she went home and within two weeks she had blister packs and her medication all organised as for awhile they were really unorganised but she was out gardening and doing the laundry which was so encouragjng! On her birthday she suffered a !massive stroke! And she could no longer really speak! And her mobility is really poor! She was moved to palliative care . all this in 8 weeks! And I have gone through all of the above including anger! I am so sad! And cry everyday, as this lady raised me and my two brothers when my parents didn’t! It is awful and I know when the time comes it will be just as much of a shock even though my anticipatory grief is preparing me! I miss the bits of her that are slipping away. I miss chatting to her even though she has a few words and phrases back, I still miss this. She is on puree diet and has very poor perception due to the stroke and needs help with feeding which is sad! But she is fully with it cognitively which is even harder as I know she wouldn’t want to be that way! I wish I could help her she is only 74! My heart is broke and I love her so much! I have never been affected by cancer before but work with people who have dementia and understand the loss without bereavement but I feel it now! Cancer is cruel!

Thank you, Litsa for your kindness. My mom passed a way a few days ago, I was with her in bed and she went to sleep…forever. We had some heart-to-heart talks near the end, very poignant, I will cherish them forever. All is well and will be well, though my heart cracked open and a huge void of sadness and sorrow reside

I am going through what so many of you are describing. My up-until-now perfectly healthy mom at 87 (no hearing aid, no medications, no glasses; yoga 3 times a week, water aerobics, book club, field trips, college classes) was just diagnosed with stomach cancer and refuses to face the reality of it. Over the past 4 weeks she has shrunk to a skeleton, cannot eat or drink and is extremely weak. She keeps putting off the doctor appointments and will not tell anyone about her condition, nor will she let us tell anyone. She survived the death of two children (my brother and sister) 20 years ago, her husband (my dad) 10 years ago, and last year my sister’s husband died, and exactly one month ago (when we were getting her to the doctor) my husband’s father died. To say I am acquainted with grief is an understatement. But this is different. This is slow and painful and we are adhering to her request to pretend that nothing is wrong even though neighbors and friends and cousins are alarmed and keep asking what is wrong. I feel like I want to at least alert her nieces and her sister and brother so they can pray for her, talk to her, way goodbye etc. Her mindset is “if they cared about me they would reach out, not just because I am ill”. She has always been hard-headed but this is ridiculous. I even saw that people who had sent “thinking of you” cards, she just set them aside unopened. I want to have a heart-to-heart talk with her, but don’t know how to do it. She has stopped eating and drinking, I am afraid only a few days are left and of course she is refusing hospice or palliative care. Please help with any advice, and God bless.

Mom’s daughter, I am so sorry for what you are going through. I wish there was an easy answer, but there isn’t. At the end of the day it is everyone’s right to die on their own terms, it is just so difficult when it hurts others or even causes themselves more pain. There are so many assumptions about death- that the person dying will find peace with it, that there will be time and space for everyone to say the things they need to say, and sadly that does not always happen. In terms of talking to her, if it were me I would start by saying something like, ‘mom I know you don’t want to talk about this, but it would mean a lot to me if we could spend 5 or 10 minutes talking’. Beyond that I wouldn’t push too hard, but that is a personal decision. You want her to know it is really important to you and, at the same time, she is the one who is dying and if knowing that isn’t enough to open a conversation, she just may not be ready- now or ever, sadly. If she is never open to that ‘heart-to-heart’, I would just do my best to weave things you may want to say subtly into other conversations with her. I wish I had a better answer than this- perhaps others may, from other experiences.

You may want to take a quick look at our facebook page. Two days ago we posed a question about the expectation for a ‘hollywood moment’ type heart-to-heart before someone dies and we got interesting responses, from both people who had and had not had such a moment. Take care and please know we are here for you!

As caregivers for my 87 year old mother with Alzheimer’s dementia, my daughter and I struggled to get through each day. We both had husbands, she has a young daughter, and both have busy lives and careers. When the time came that we could no longer care for Mom at home, we both began going through emotions that we could not put a name to. When I read an article about anticipatory grief, it described our emotions perfectly. We no longer had a mom/grandmother that we could have a normal conversation with, could no longer take on trips or have family functions with. Placing Mom in an assisted living facility in our town was a difficult transition for all of us. Not because of the facility, they have a beautiful place and she is treated like a queen. It was because we felt that we were one step closer to losing her. I feel that this is why we struggled with the decision far past the time that it needed to be done. I am comforted to know that this is normal and it is okay to grieve before her actual physical death.

First, I hope you don’t think I’m crazy, but I am really struggling with the impending loss of my beloved dog. I really can’t share this with anyone as I am actually a hospice nurse, and help people deal with the death of parents, siblings, children, friends and relatives on a daily basis. I feel that feeling this anxiety and sadness for my furry companion, minimizes what they are dealing with, yet the feelings are undeniable. I struggle with both the honor and responsibility of deciding when her life has lost its joy, and when I am being selfish and keeping her around for me. People tell me I will know, but I don’t! Comments like you can get another dog, well that just hurts. I am 60 years old, have lost grandparents, aunts, uncles, cousins and recently a niece, but the coming loss of this elderly furry companion of mine, seems to be throwing me for a loop. Thanks for letting me vent

Sorry it took us so long to respond. I’m so sorry about your beloved dog 🙁 You are SO not crazy! We just recently wrote a post on this actually, you can read it here. We also recommend the Grief Healing Blog for people dealing with grief related to a pet. There is a ton of different grief related information here, so just search for pet and you should find a bunch of posts.

Thank you for this post as I feel I have found the name of what I’m going through.

After being sick for over three weeks, my mother was diagnosed with small cell carcinoma extensive stage four. Originally they thought it was t3 bladder cancer but after more tests – it is everywhere in her body- liver, lungs, bones and pathology showed that it was small cell carcinoma – no cure.

When I first heard the news when we thought it was bladder cancer (bad enough) I felt like I’ve been hit by a truck. My mom has been a best friend for years. I am 51, and she is 75. She was working still full time when this started mid March. It is now end of May and in that time she has lost more weight and the cancer has spread. Tumors everywhere.

According to medical research and the oncologist who gave us the news end of April, this type of cancer has no cure but treatment could give her 3-6 months of remission.

She is decided to undergo treatment which involves three days of intense chemotherapy, followed by 10 days of radiation. She has two more days of radiation in this first cycle and goes right back into chemotherapy.

From the very moment we heard the news, and I understood its implications, I have not been able to feel hope. Only 1% live a year even with treatment. I have been grieving. I’ve dived back into eating sugar something that is terrible for me (I have adrenal fatigue and I’m pre-diabetic). I went to go pick up a prescription for my mom last night and ended up stopping at a cafe and buying 2 cookies and as I ate them I realized I was angry – and even angry at my mom for being sick and needing me. It felt like the only moment of happiness that day tasting the sugar and sweetness in between radiation and a 3 hour MRI where she was in pain the whole time.

I feel sad and angry and hopeless about her condition and then guilty for my feelings. I would like to just curl up in bed and sleep for days. But that would mean actually sleeping which eludes me nightly.

From the start, I understood its implications, & I have been unable to feel hope. I have been grieving. I have had constant headaches and back pain. I feel like I’m walking through a bad dream that doesn’t end.

My sister (who lives only 15 minutes from my mom) and I thought we could divide up the week to provide most of the care for her but we are both already seeing negative effects of our own lack of self care. Sis is now sick with viral laryngitis and can’t be around my mom for a week. I’m exhausted and depressed. I feel like my mom is not my mom anymore. She is quieter, little (loss of a lot of weight), and so tired all the time. I created a pain medication chart to try to make sense of everything she is taking. There is no sense to cancer. This vicious weed that has taken over my moms body.

I feel guilty that I don’t feel hopeful. I feel guilty that I have requested outside caregiving for my mom because I don’t know how to do this each week. Mom wants to live and I want her to live but I don’t want to be hopeful and then have that hope smashed. I don’t want her to feel devastated if the chemo and radiation fail to get her into remission. I feel selfish not closing up my business to be with my mom 24/7. I started my business 4 years ago and it is just now taking off and I recently leased an office and hired a part time employee. I’m scared as stressed that I will not be able to function well with my clients or keep up the work to pay the bills I have. I feel guilty that I am thinking about my business. I can’t seem to win. My thoughts are unkind to me. I feel impatient when my mom needs her water, phone, and glasses for the 10th time in one day because she is too weak to carry them herself from the bedroom to the couch. Then I feel guilty for having impatient thoughts.
I’ve tried to find a support group near me but when I am not with my mom I am working. I feel guilty now for this post as it feels like I’ve just been completely self indulgent when my mom is the one dying from cancer.

Lisa: I feel for you. The guilt can be overwhelming. For me, the cycle of guilt and not taking care of myself (via a decent sleep schedule, saying no occasionally, and eating right, to name a few) fed the cycle. I felt guilt, so I ate crap that was bad for me, then justified it by deciding I was a terrible person anyway, so it was fine. I have had to consciously break the cycle and remember that although I love mom and miss how things were….I have people who need me to be sound and care for myself so they don’t find themselves in my place too soon. All the best to you in your struggle dear lady.

I’m so please to have found this article. It explains exactly how I am feeling right now and has stopped me feeling so alone. My mum died when I was 12 and from then on I was brought up by my grandmother. I’m now 30 and she is 84. She is so much more than a grandmother to me – she has taken on the role of mum, dad, grandparent and best friend since my mum died. I have felt like I am losing her everytime she has had a decline in her health or independence over the past several years. The feelings I experience remind me of the grief I experienced when my mum died. This weekend she had a fall and has hurt her arm. Her memory is also getting increasingly worse. I feel like I am losing her although she is still alive. I have been crying almost constantly all weekend and can not imagine how i’m going to get through work tomorrow. It’s a very difficult thing for me to process or to explain to others.

My husband died of acute meyloid leukemia on April 17th. He was diagnosed on March 31st where they told him immediately that he had a few weeks to a month. For the first two weeks I was with him in the hospital everyday, sometimes I spent the night and we talked about everything possible. We wrote his obituary together, he wrote a letter to our friends and family that he wanted read at his memorial service and he made a video for our two boys. For 21 days I sat by his side, I cried myself to sleep at nights alone, I cried when they gave him the diagnosis, I brokedown when they put him on a ventilator on April 10th. That was the day I think I said goodbye. We couldn’t talk anymore, he didn’t know I was there or wasn’t certain. I knew he could hear me but it wasn’t the same. It was very hard to watch over him like that. Twice during his hospital stay I was told he wouldn’t make it through the day, so I had previously prepared to say goodbye to him. Once he did pass, it was just surreal that it actually happened. I felt okay though because he had such a long road if he survived the initial treatment I wasn’t sure he would make it through the next round. Now though, my family is worried I’m rushing through things, that I’m not grieving right. I told everyone, this has been my reality for over a month, you all are just now dealing with this. I’m glad to know it has a name but I worry that I’m missing something…

My daughter was diagnosed with stage 3 cervical Cancer 3 months ago
She was ok at first.She had her family around her helping her.I was helping her with her 6 children , taking her to appointments making sure she was eating well.Letting her know I cared for and would be there for her..As did her sister who didnt get along with her very well..about A month ago my daughter with cancer suddenly turned on us all.She accused her sister of a crime.Hurting her business..Then she started pulling away from me.Even denyingme access to my grandchildren who
I have had a lot to do with all their lives.She suddenly took 4 ifher children out of school and has dissapeared with her boyfriend in a caravan..Before leaving she said she didnt have a Mother anymore.She has told her children they dont have a Nana anymore.she has said she does not want to see us anymore.she has taken of even though shevwas to begin treatment next week.We are distraught.I cant believe her so called partner Iis part of this.its like they are both in denial of her condition.

Yvonne, I am so sorry. This sounds like a complex situation and I’m sure it is very diffult. One thing many people don’t realize is that Elizabeth Kubler-Ross’s 5 stages of grief were actually developed in her observations of those coping with the diagnosis of a terminal illness. We have actual heard from a few other people who have shared similar stories to yours and it is very hard to know what is going in any particular situation. I do hope that with time you are able to reconnect with your daughter and I hope you find some helpful resources here on our site.

Thank you for this article. I’m experiencing the grieving process and my grandparents are still alive. I feel blessed that I am nearly 32 years old and still have them here, however since they’ve been here my entire life it is difficult to process the feeling of life without them. My grandfather is 89 years old with lung cancer and my grandmother is 83 with the early stages of dementia. I understand they may be near the end of theirs lives and it hurts me. Like the author, my grandparents babysat me when I was a young child until I started Kindergarten while my parents worked full-time. I was very close to my grandparents. My grandmother was known for being a good cook and my grandfather a WWII veteran had always been a hard worker and after retirement he spent much of his time doing various yard work projects. I always saw my grandpa as a strong man and now its so hard to see him slow down and not be comfortable driving due to his eyesight and my grandmother’s food doesn’t taste the same anymore, she looses things and sometimes forgets stuff. Grandparents are so special, that relationship can never be replaced. Quiet often my grandparents will purchase a 12 pack of Coke for me because they know its my favorite soda, when they do that I feel like i am 10-years old again being spoiled by the grandparents. I just adore them and appreciate every day I have with them and it’s difficult letting go. My husband tells me “they’re still alive, don’t cry yet just enjoy them”. I sit on the couch and tear up because I know they will be departing this earth soon. My parents are divorce so i feel that sense of security with my grandparents who have been married for 64 years, it’s partly because I miss the unity of my parents. I fear going on vacation across the country in case something happens. I cannot completely enjoy life know my grandpa has stage IV cancer and knowing he’s suffering. He never admits his pain and suffering but we all know he is doing worst health wise than he makes it appear. He tries to act strong. I’m having a hard time with this part of life. I have to go back to the realization that it’s been such a blessing to have them all of these years. Thank you so much for this article.

I am so angry, and I have been wondering if this is normal. My father is in end-stage COPD. I finally got him connected with Hospice care last Thanksgiving after his second trip to the hospital in a couple of months. He refuses to stop smoking, he lies to me about quitting smoking. He smokes with the oxygen tube connected to his nose and he has done it with me around while I was sitting on his deck cutting his dogs’ toenails. I told him, “if you have enough respect for yourself to not blow yourself up, please respect ME”. He just simply doesn’t care. I am his only caregiver other than the little Hospice does for him. They change his sheets and wash his dishes and that is about it. I have Durable POA and he is cantankerous and refuses to let me make decisions for him, such as putting him in a nursing home. I know it is a difficult decision, and nobody wants to go there. BUT, he will not even bathe himself. I cannot stand to be in the same room with him. I don’t know if he is physically unable to do so, or just doesn’t care. I think it is a bit of both.

He told me Hospice won’t bathe him. That seems strange, because the first Hospice that I connected him with WOULD, though he wouldn’t let them, and then he fired them for some asinine reason like they wouldn’t come to his house when he wanted them to – he wants everything on his own schedule. He is the most difficult man I have ever met in my life, and he was this way BEFORE he became sick. My mom tells me to just not go over there, but honestly, as a Christian, I cannot do that because it is my duty to ensure he is taken care of and it is just plain WRONG to ignore someone who can hardly take care of themselves. Oh, but he can drive to the store to pick up his cigarettes…. in his bath robe. So, with that being said, I’m pretty sure you can tell there may be some mental illness going on as well. THAT BEHAVIOR IS NOT NORMAL!

I find myself angrier and angrier every time I even have to go over there. I do his shopping for him and go over every weekend to taken him his groceries. Sometimes I will do some laundry for him. His house smells so bad I cannot even stand to be in there. He hasn’t cleaned it in years, even before he was ill.

He has exposed himself to me about four times or more lately, and it was quite traumatic. I don’t know if it is on purpose, or if he just doesn’t care. Half the time he is hanging out of his underwear, which don’t fit. He blows up at me and said it it no big deal, everyone has seen someone naked. Um… NOT MY FATHER! I do not think that is on the list of things I should have to endure.

Is it normal to feel this angry BEFORE someone dies? Seriously, I end up yelling at him every time I go over there and I hate myself when I am around him. This is not me. I enjoy helping people. I volunteer. I lead projects. I consider myself a pretty responsible person. I recently started tutoring with a high school with children who are struggling and who also really act like they don’t want to be there. However, I am still more patient with them than I am with my own father.

I am familiar with the five stages of grief. I never thought they would start BEFORE someone dies. I didn’t feel this way when my grandmother passed away at age 102. I loved her very much. I seriously cannot express the level of anger I feel right now. I have endured some really horrible things in my life, but I honestly don’t think I am as angry as I am now. It is affecting my relationships. Luckily I have some good friends who are compassionate, but I also have some that apparently have no compassion at all and you would not believe some of the things they have said to me, basically calling me a spoiled brat in so many words. I have one sister who lives over 1,500 miles away and she will not speak to him even though she knows he probably doesn’t have but a few more months to live. And *I* am the spoiled one? I have had to help him out of his chair and help him get his oxygen back on when he was completely naked. That is not really something I signed up for or ever thought I would have to do/see.

I am searching for a good therapist. I have Fibromyalgia and some other issues and I can tell this is affecting my health too. I have had three flares in the past couple of months and I have not had any issues for well over a year.

Thank you for listening to my rant. I really honestly never thought this would be something I would be going through at 45 years old. AND the doctor told him to stop smoking over 30 years ago. I feel like this could have all been prevented.

My dad has had the end stage of COPD for almost 7 yrs now and I have had anticipatory grieve since then. I’ve never had a close relationship with him so that makes it worse, when you want to but can’t talk.

Hey, I’m sorry for everyone that is grieving! Here is my story. I am 25 years old & my mom is 59 and has end stage copd! Her lung doctor told her in February 2011 she had end stage and we neither understood what it meant and I’m not sure she does at this moment. She has smoked since for 45 years. She was put on oxygen in December 2009, 5 years ago now. 2 liters.’ When she first started going to the lung doctor her lung capacity was 30-40% and the last time they did it 2 years ago it was 16-19%. She gets really out of breath at times and still smokes some! I have cried , screamed and begged for her to stop! She does way better than you can imagine when she smoked 2 or more packs a day for all those years! She has 1 cig a day versus 40. She passed out in Oct 2011 & was told she had blockages in her carotid in her neck. Well fast forward to March 9, 2013. She was laying down and I checked in her and she would not respond, I called the ambulance and they took her and she was put on a ventilator for 46 hours almost 2 days and came off thank God! Well she had her carotid artery surgery in July 2013 and removed the plaque. Then December 31, 2013 I noticed she looked pale & she kept saying oh my god! My dad and I took her to the hosptal & anyway they put her in the hospital on a bi-pap machine a form of life support for less than 24 hours & she got better. Then on April 4, 2014 she looked extremely PALE & saying oh my god! I called the ambulance they came out and checked her oxygen level and it was 54!! They asked her name and she answered it and asked what year and she didn’t know but since she knew her name they said they couldn’t force her to go to the ER! They asked did she wanna go and she said no. As soon as she left dad and me put her in the car and floored it to the Hospital! On the way her eyes were going back in her head.Got her there & within 9 to 10 minutes they out her on a vent in the ER! Said her blood gases were horrible! She stayed on for 5 days! The first 4 days the doctors tried to wean her off the vent her body was not responding and i didn’t know what that meant and they said we’ve lessened the meds and she shoul be responding to requests like move ur hand or squeeze my hand. The doctor said she should have been in a coma when her oxygen was 54! I was an emotional wreck and going crazy!! Smoking is so bad and I encourage everyone that does to stop!! It’s about to be one year since she came off it! She stayed quit smoking from April 4-May 10 2014. Just 5 or so weeks. I am expierencing the anticipatory grief BIGtime!!!!! I have for years actually! I told my brother thanksgiving 2013 that I miss mama and daddy and they are both living!!! He was shocked! By the way Mamas weight has dropped from 140 in 2009 to 105 as of now. we wondered for a few years why and finally got a reason because her struggle to breathe and exertion burns calories. Anyone that wants to email me can at [email protected]

First, I want to say I’m sorry to all who have lost or dealing with the eminent loss of a loved one. My heart goes out to you.
My grandmother who was 3 years in remission of breast cancer was diagnosed this past summer with stage 4 bone cancer which has now spread to her liver. She has had two heart attacks in the past year due to damage caused by the chemo and radiation so She isn’t taking conventional chemo this time around. I have been preparing for her passing for some time now though I believe she has time left. Then in January 26th we found out my mother who is 48 has stage 4 lung cancer and it has spread so far( brain, liver, spine and bones) so rapidly that it’s non treatable. She had three major strokes two weeks ago that diminished her brains ability to recognize what she she’s and her speaking patterns. They gave her 3 months at best. I’m afraid to lose both of them. I don’t have a father and my grandfather is very, though not terminally, ill as well. I’m afraid that losing my mother will also cause such stress and grief on my grandmother that she will go soon after. I’m sad and angry, I just don’t know how to deal with this all at once. I’m overwhelmed.

I am so thankful that everyone is willing to share their experiences. I don’t feel so alone now, knowing that somewhere out there someone understands. I always thought I was crazy, grieving for my Grandparents when they are still alive. Because of situations, my maternal Grandparents practically raised myself and my brothers. Their home was a safe haven; a happy place. Whether we were inside in the kitchen with Grandma or outside in the paddocks with Grandpa…those are my favourite memories. I haven’t been particularly close to my own Mum because events made her very reserved and in her own little world. So when I needed someone to talk to (especially a female) I would go to my Grandma.I would talk to her about my struggles, my broken heart, dreams that I had. Grandma never passed judgment, only kindness and love. However, she was strong enough to correct me if she thought I needed it. She taught me everything that a young lady needs to know in life. The last couple years her memory has been getting rather bad. At first it was just little things, but now she can hardly put sentences together. It’s like she knows what she wants to say, just doesn’t know how to say them anymore. Apparently she is having lots of little strokes at the front of her brain which affects her thinking ability. It breaks my heart to see this beautiful woman slipping away. I have tried not to question and not to get angry at God but I can’t help it. I honestly don’t know how I am going to cope without her. She is my Grandma, my sister by heart, my angel and my best friend. I almost wish I didn’t love so much because then it wouldn’t hurt so. When I was little and they would go on holidays; I would go into total shut down mode. I would not eat or sleep, so in the end they would take me with them. All I know is that when they (my Grandparents) got to their eternal home; I want to go with them.

Your grandmother sounds lovely. I’m so sorry that her health has been poor lately. You may also find this post on Ambiguous Grief helpful. Ambiguous grief is when we grieve someone who is still alive, it’s different from anticipatory grief because the person’s is not terminally ill per-say and is typical when someone has changed for a variety of reasons including things like dementia, mental illness, etc. This doesn’t describe your experience exactly but there still may be a few helpful take-aways.

My mom has developed sudden onset dementia. She has had numerous physical issues for many years, but dementia was never one of them. Six weeks ago she was writing out checks to pay her bills and calling me to ask about her granddaughter and talk about ‘remember when?’ Four weeks ago she was admitted to inpatient hospice and was unable to have a conversation, didn’t know where she was, begged to just go home. She has continued to deteriorate. I live out of state and my guilt is enormous. I am now trying to get her moved closer to us, but she could honestly die any day. My struggle is anticipatory grief, my frustration at the lack of answers, and the apathy of systems that simply do not care that these are my mom’s last days. I woke this morning and burst into tears. Now am trying to get ready for work and I just can’t stop crying. This sucks.

My mom just passed away about a week ago from cancer. She had breast cancer in 2012, and kicked it’s ass. In the fall of 2013, during a check up, doctors discovered that the cancer had came back. This time they couldn’t get rid of it, it was aggressive and spreading fast. I’m only 20 years old, and have 3 younger sisters. Needless to say, our mom was taken from us way too soon. I’m so relieved that I discovered the term anticipatory grief. I have been feeling so guilty since she passed because I’ve only cried 3 times and I have been feeling “fine”. Everyone keeps telling me I’m so strong, but I don’t agree, It’s like my emotions have been turned off. I loved my mom very much, she was my best friend. My sisters, grandma and I were with her when she took her last breath. She was surrounded by the ones who loved her most, I just hope she was able to feel our presence. A week before her death, her health escalated very fast. She needed assistance with everything. She could barely speak a few words, or open her eyes. That’s when I realized that my mom was gone, even though she was still alive. Her final week was very confusing to me. She was still breathing, but her body was just a shell. When she passed I did feel relief, but I didn’t feel guilty for feeling relief, because she was no longer in pain and passed so peacefully. So now I’m wondering why I am feeling “fine”? Could it be that I am still in shock?

You may be in a little shock. Numbness is also a normal feeling immediately after a death. Honestly though, after someone dies from terminal illness feeling ‘fine’ is normal as well. I have heard many family members say that others were shocked when they wanted to go right back to work or school immediately following their loved one’s death from terminal illness, but many people feel ready because they’ve already been dealing with and processing the impending death for so long. This is kind of why anticipatory grief can feel so surprising to us after the death, we expect to feel a lot more of those intense emotions but in many cases we’ve already felt them. I don’t think this means you aren’t grieving and it may be so that as time unfolds you have times when your grief is more obvious to you, but please don’t think you’re not normal at this point. If a few weeks or months pass by and you’re still feeling unsure, check back in; but my guess is that your grief is just following the path that’s natural based on the course of events and your unique coping style.

I am thankful for this article. In August, 2013, my dad was diagnosed with stage 4 colon cancer. It had spread to his spine and lungs. Despite regular colon check ups, they had somehow missed it. Anyway, they convinced him that with chemo and radiation, they could probably extend his life to two years or even longer. Without, he would have about 6 months to a year to live. Chemo made him so sick. He shrunk down to the size of a skeleton. Radiation burned his esophagus to the point that he could no longer eat without choking. He had to have it stretched a few times, but it gives him trouble. The cancer has given him no other options but hospice. He has a feeding tube and tries to eat, but most of the time he has trouble. He is a fighter and does not want to die. He is at home with my mother, who takes care of him primarily. The hospice nurses come in when needed and throughout the week. My dad is 65-years-old. I live a distance away, so I don’t get to see him too often. Each time I see him he looks dramatically different. It’s one thing to hear my mom tell me things on the phone, then to actually see it with your own eyes. I cry after I see him. One time I cried as soon as I saw him – I thought he was going to die within days – he looked so sick. I’ve told him things that I thought he should know already…I hold his hand and always tell him I love him when I see him. I always tell him I pray for his comfort (he is in pain or sick a lot) and for him to feel some happiness and peace. I have been an emotional wreck since August 2013. I’ve been in counseling, put on medication, etc. I suffer from panic attacks and major depression. It is hard for me to function anymore. I feel like my heart is just being ripped to shreds. People tell me I should be happy that he’s made it to 2015. I am, but I am beyond sad. I know he won’t make it much longer. I can’t let him go. I just don’t know how. But I don’t want him to suffer, either. No matter how much I say “I love you” or “Thank you for all you’ve done for me” it can never be enough.

is it possible to have this over a dog?
He was like my soul mate and my fur baby kid. He was the only one in my life was with me through thick thin. He was my first only dog n like a baby child to me, then his heart murr murr turned into heart failure then he died 1-2 months after in nov. 12 year old. think I went through many types of grief ? changed personality dog, sick to dying dog to dead dog. I love him. Miss him.

It is absolutely possible. We don’t cover a lot about pet loss, but I highly recommend checking out the Grief Healing Blog. I’ve linked there to one of her posts on the significance of pet loss and from there you can find many other great articles. I’m sorry about the death of your dog, I’m sure he is greatly missed.

I am reading this at work, and barely keeping it together. Pet loss group changed our lives after the loss of our special “little man” Hershey the best mini weiner dog in the world. Now Alzheimer’s is taking away my Dad. And honey, pet loss is just as devastating I can assure you. Fur peeps are family too. Beyond the pop print.com is the online arm of the group that we belong to. It is run by Micky golden Moore who is an Earth Angel if ever there was one.

Ric, I am so sorry for the death of Hershey and now what you are going through with your dad. It is so true that the loss of fur family can be as devastating as other losses. It is unfortunate society doesn’t always recognize that. Thanks for sharing the resource that has been a help for you!

I am so glad to find this site! I am sitting and crying now. I am the primary caregiver for my Mother, who is 93. She has a non healing burn wound on her leg and has been for several debridements, and of course, each time the wound becomes bigger and uglier. The doctor is now talking about putting in a stent to restore circulation to her leg and hopefully get the wound to heal. But I know that if that does not work, the next step might be amputation. At her age, and with her other health problems, it will kill her mentally and emotionally – if not physically.

I can’t stop crying and thinking that if I had not taken her to the doctor who recommended hot compresses she would not be in this mess. My husband says I’m being crazy – I that I did not create her circulation problems. He is very supportive, but he lost his parents at a much younger age and knows how lucky I have been to have her this long.

I know he is right, I have been lucky to have her, but seeing her hurt and frightened is so very hard. Sorry……can’t stop crying…..

Leslie, I am so glad you found our site and found some comfort in this post. Though your husband is right, you are lucky to have her, that in no way changes the deep emotions of seeing her suffer and the possibility of losing her. Guilt is a complex emotion and, with what you are feeling, you may want to check out this post http://www.whatsyourgrief.com/guilt-and-grief-2/ . It is easy for others to say to us ‘don’t feel guilty, its not your fault’ but the reality is that guilt is a valid emotion and we all have to find our own way to manage it. Please take care . . . sending good thoughts to you and your mom.

It was so helpful to read this article and the stories people have shared. Thanks to everyone. My husband died about a month ago, more than 3 years after his brain cancer diagnosis. During that time he had many surgeries and treatments and was in and out of the hospital but up until the last year or so there were many times when he really seemed himself and we had a lot of good family time.

In the last year he was much sicker, needed a lot more care, and never truly returned to being himself. I definitely think I started grieving during this process and it is making the grieving after his death different than I expected. Like some of the others who have commented, I am so sad after his death but feel like I am farther along in the process in less time than I expected. It’s still hard to find a new normal and rebuild routines, but I haven’t been just completely distraught like so many sites and people seem to expect I should be. The hardest part for me is my young kids. They did not start the grieving process early, so I feel like I am mourning the loss of their father more than the loss of my husband, which is a strange realization. In some ways life is much more calm than it has been recently. At the same time it is still surreal and hard to know exactly where I fit in the grieving process. So many resources are for people twice my age and I feel like I am not meeting the ‘expectations’ of the grieving process. That said, recognizing the anticipatory grief and including as a part of this process has been a big help. Thank you.

Anna, I am so sorry about your husband. If there is nothing else I could tell people about grief, it is that it is so different for everyone. There is no one thing to ‘expect’ because everyone grieves in their own time, in their own way. One of the huge reasons we started this site was because we also had the experience wthat the resources available were for people twice our age and we knew, as grievers and mental health professionals, that there were so many other grief experiences that needed to be discussed. Glad you found this post and that it was helpful.

In reply to the post from Kimberly above…this IS Kimberly again, LOL. I was posting from my phone and using voice to text for the above post. I so wish I’d been able to edit it before posting. What was I thinking? Full of voice to text botching and errors but I think you can all get the gist of what I was saying despite the errors. Ugh. Never again will I post without editing or post from my phone where that is difficult.

Haha Kimberly that is funny! Thank you so much for your comment, I don’t think the fact that you didn’t edit it makes a difference. Everything you said makes total sense. I’m so sorry about your husband’s illness and death. I’m wishing you and the kids peace in the next couple weeks as your adjust to life without your husband.

my husband passed away two weeks ago after a little over a year long battle with metastatic ocular melanoma. I suffered anticipatory grief throughout his illness each time more bad news would come in about new tumors or gross of tumors. When they told us two months left because of the brain tumor and I really suffered. I would have about two days of deep grieving after each bad news. We have four small children 12 and under. So I always had to be strong and move on in spite of the grief. We also homeschool our children which was a major blessing because we were able to spend our last year together focused on her time as a family. Knowing that someone has a very limited time left really doesn’t allow you time to do important things, to say important things, to plan for the inevitable. When he died it was the hardest moments of my life to be with him for those last breaths. But we all got to say goodbye. I promised him that I would be strong and brave and I’m really trying my best. I have felt very strange that I haven’t broken down regularly and just been a mess. For me, I feel like the anticipatory grief really did take away the deep sting of the actual death since the dying happened so slowly and his withdrawal from our daily life and activities was a long and slow process but it kind of got us all used to less and less of him and I think it has made it easier on all of us. Of course it has been only two weeks and the funeral and memorial are done and now I’m trying to find a new normal. It’s very difficult when my life revolves so much around my husband schedule more than I was ever even aware until he was gone. So finding the new normal is my new mission. It was also helpful for me to Journal throughout this entire process. I begin a journal from the moment we found out he had metastatic disease. So journaling has been very healing and helpful for processing and having a place to express all of my deepest feelings. I also kept an online blog which was helpful to share our journey with other people. My faith in Christ has been The most important aspect of getting through this with Grace. I know my grieving will go on and the children’s grieving will go on and will change with each stage in their life as not having their father there will affect everything. I think the hardest thing is trying to be aware of each one’s needs with four of them grieving and me with my own grieving it does make it more challenging but it also helps me to be less focused on myself which I think is helpful. So in my case I Believe that the anticipatory grief has really helped me to deal with the actual death. I’m not saying it’s easy I just think knowing that nothing was left unsaid, that all the important things were focused on, and we enjoyed our time together because we knew it was limited in a way that you can only know when you have a terminal illness. Yes, for me the anticipatory grief was a blessing in disguise. I know that it any moment my grief could change so I just pray for strength for each day and for each moment.

Thank you so much for this, I found this at a time when I badly needed it. I had never heard the term “anticipatory grief” but it describes exactly what I have been going through as my mother battles incurable ovarian cancer. You have helped me let go of some of the guilt I have been feeling about mentally preparing myself for her death, and I now understand these intense emotions that keep hitting me like waves are a normal response, putting a name to it helps. I struggle with the fact that other members of my family seem inexplicably optimistic about her recovery, when I have heard her doctor say time and again what the reality is…but I understand they are dealing with it in their own way, and I am just “front-loading” my grief. I have felt a lot of guilt, about not being blue-sky hopeful, about doing planning for her memorial in my head, about a sense of wishing it were all over after going through this journey for over two years already. One of the reasons she chose me to be the keeper of her estate is because I have this sense of practicality and responsibility about me, but occasionally I just crumble, and feel better afterwards. This site is helping me understand that those feelings don’t come from a lack of love, in fact they are created from the intense love I feel for my mother. I am so thankful for these last years we have had together, so thankful for the chance to say goodbye properly to her. Thank you for letting me express this here.

Sorry to everybody about what you are going through. I posted a year ago about the anticipatory grief I was going through with my Mom’s ovarian cancer. Just rereading these is a reminder of what incredible pain I was in. I wanted to come back and update, because what I am going through after her death is quite interesting.
After a very long year of fighting, my mom passed away in her home with her loved ones around her, holding her hands. It was beautiful and painful and she was completely ready for that transition. It was a tremendous relief to see her freed from the body that had given her so much pain and discomfort. I feel her spirit around me every day, free and loving.
The reason I wanted to update, is because I am one of those people who is not experiencing a lot of intense grief post-passing. What I feel is peace, a sense of completion, and so lucky for the time I had with her and the fact that we said everything we wanted to say. The people around me are confused by my reaction, and I suspect they think I have not accepted her death, but in fact it is quite the opposite. I spent years crying and mourning her loss. But now I feel incredible peace and understanding. What a gift she gave me by knowing her.
I have to give myself permission to feel okay with a feeling of calmness and relief, rather than the intense grief others are expecting me to feel now. I don’t feel guilty – my Mom knows how much I love her and miss her.

Thank you so much for sharing your experience and for reassuring people that – it’s okay to feel what you feel. I’m glad you had meaningful time with your mother before her death and I am so grateful for your sense of peace. We know that doesn’t mean you won’t grieve her forever, just that you felt the immensity of this loss at your own pace.

Hi Eleanor, Thank you for your reply. I am still finding it strange that I am not running up to the hospital or calling to check on her. Everyone told me I was an amazing daughter but that was easy because she was an amazing mother. As her disease progressed, cancer left her unconscious for a week before she died, this was difficult and caused more anticipatory grief as I was not told that this could happen from the palliative care team…suddenly I couldn’t talk to her anymore and this was shocking to me. She even suffered in her sleep and they had to administer more pain meds, what a cruel and unforgiving disease. I hope to see advancements in this type of cancer in the future as she did everything the doctors told her but nothing could be done and they DID catch it early!

My amazing mom was diagnosed with vulvar cancer 4.5 years ago and had 9 major surgeries including radiation. I am an only child and my dad was her primary caregiver. I have been grieving losing her and feeling angry , depressed and crying throughout this dreadful and difficult journey. I have always gone above and beyond to try and get her the best help in the fastest manner possible , but this disease could not be defeated. We were blessed to be present as she took her last breath. I too found that I am feeling a relief that she is no longer suffering, I keep waiting for a meltdown to happen but my counsellor told me that it is because I had lots of time to accept this and of course I will have many sad moments but I too was wondering if this is normal so I am glad I found your site.

Gina, I’m so sorry about your mother’s illness and eventual passing. I’m glad you found this post because what you are experiencing is absolutely normal. Don’t worry though, there’s plenty of time to break down and feel crazy about your grief 🙂

Discovering and reading about anticipatory death was such a relief to find. To learn there is actually a name for before death suffering helped me to understand all these mixed feelings I’m having about my husbands illness. I have been feeling confused about the angry, frustration and exhaustion I’m having caring for my husband, but reading you comments express every emotion I’m experiencing. thank you so much and may GOD bless you always.

Thank you to everyone that has shared their story on this page. My dad was diagnosed with Stage 4 lung cancer about 9 month ago, and although the preliminary chemo and radiation was successful, he has grown more tumors and the outlook is looking grim. Not a day goes by that I don’t feel sad, guilty, angry, hopeless, etc. Though its not happy at all, its comforting to hear that i’m not alone in the struggle of loosing a loved one. What makes me the most sad is how awful cancer is and how many lives in touches in some way. I want to thank you all for sharing your story and i pray that one day we find a cure to this horrible disease.

Around November last year, my Uncle called me to tell me my Mum had been diagnosed with cancer, and that it was benign. The news hurt me, and I had just started my first year of University so I was already feeling strains and stress of coursework. In December, my Mum called me to say that she was sorry, and that she had lied, she had stage 4 lung cancer that was incurable, and that she had a term time of 12 months. I am shameful to say, that I didn’t believe her, I was so caught up in denial of this fact because I couldn’t bear it to be true. Me and her have fought constantly over the last decade, and since I left home at 14 to live with my Dad, my Mum has been very lonely, and always made me feel guilt for leaving home. This guilt only grew more with this news, as she lives alone. My mum wishes to receive homeopathic remedies, which I don’t believe in, but it’s so terribly hard to support someone with their path if you can’t understand what they believe. Her cancer has grown, and she now has a growth wrapped around the main artery feeding to her heart, and thus compressing the artery. Her situation is deteriorating, and I am totally lost. Is it bad that I want this over, I don’t want to live in suspense any more and I don’t want to see her in pain or lose her dignity.

So glad to stumble upon your article. Thanks so much. I’m managing my ‘anticipatory grief’ around my 92-year old father who is now in a nursing home and suffering of Parkinsons and very early signs of dementia. Thankfully he is very upbeat and positive which is remarkable considering he is a survivor of the atomic bomb in Nagasaki. He’s an incredible man, my hero to say the least. My husband and I are both self-employed and have travelled much of the winter months and although I am the primary caregiver managing all my dad’s affairs and needs long distance and I Skype and talk on the phone with my dad multiple times per day while I’m out of country, I feel terrible for not being physically there with him. Now that I’m primarily back in the country for at least 3 or 4 months and live only a 30-minute drive from his home, I’m there almost every day spending quality time with him. I feel badly if I miss a day. I think it’s partly because I feel bad about having been away so much over the winter. In any case, there are moments where I am pushing him in his wheelchair where I am looking at the back of his head and I get this wave of grief that comes over me and I have to fight back the tears. I have no idea how much more time I will have him and it is not easy to imagine my world without him in my physical space where I can hug him and look into his eyes and tell him how much he means to me. Gosh, those moments are difficult. Anyways, I just thank you for your article and will find my way through this. I allow the feelings to come, but I do not dwell on them and thankfully do not get stuck in them. They come and then they go, they are moments. I’m just thankful that I have a father who I love so dearly that I can even have these moments. It’s part of the process and I’m okay with that 🙂

My heart goes out to you. The confusion of what’s going on with your partner, the knowledge that it’s likely serious, the worries about your son – it is so overwhelming. It has to be near impossible to focus on work right now, but I know sometimes we don’t have the luxury of stepping away from that aspect of our life. First of all, I hope for the best; sometimes things turn out to be far better than we expected and I wish this for you. If not – as a caregiver, a father, and a husband – you have a long road ahead of you…but you can do this one day at a time. There are things out of your control and there are things in your control, after you’ve had time to process hopefully the controllable things will seem evident and manageable. We are here for you and we would like to answer any specific questions you have – both for you and for your son. You can ask here or privately by e-mailing us at [email protected].

I’m posting this at work because I can’t bring myself to do anything productive and I’m struggling to fight back tears constantly.

My partner and I have been together 17 years and 5 months, and we got married in DC in January of this year. Nearly 7 years ago, my sister offered to be a surrogate and so my partner and I have a beautiful 5 1/2 year old son.

Two years ago my partner had a heart attack. They found 3 blockages and determined he had a bundle branch block, so the right side of his heart doesn’t beat. The cardiologist could not tell how long he had the bundle branch block because it appeared his heart, already in a weakened state, had adapted and was beating differently, with a low ejection fraction. The doctor at that time stated he was in heart failure. Fortunately, they were able to get to two of the blockages and put stints in, but could not reach the third blockage. So, begins my partner’s life on Plavix. All the while we’re trying to raise a beautiful baby boy.

Last year he started feeling bad again, and they put in a pacemaker & diffibulator and determined he had a blood clot that could not be surgically removed for fear if it came loose it could travel to his heart. So, the doctor prescribed more blood thinners.

For about 6 or 8 months he awakes every morning with a bloody nose & everytime he urinates he has signfigant amounts of blood. When we contacted the doctor he figured it was due to the blood thinners.

About 3 weeks ago, he went back to the doctor, still bleeding from his nose and in his urine every day, just to find out the blockage is still in his arm and they cannot operate. As for the blood in his urine, the doctor prescribed antibiotics in case it was some sort of infection. Due to his increased exhaustion, we agreed for him to stop working.

Yesterday he went to the doctor because he still has blood in his urine and they have now referred him to a urologist. Doing research, I realize with his symptoms it may be something like kidney, bladder or prostate cancer.

Our son is 5 years old. He is such a blessing in our lives. When we agreed we were going to be parents, we agreed to do it as a team. I’ve realized over the last few days that’s not going to be the case…..

Yes, I grieve the possible loss of my partner, but when I think of our son, I loose it, the grief is so overwhelming, it’s much harder and deeper for our son …. my son …. because I know in my heart it’s not a matter of ‘if’ our son looses a parent, it’s a matter of ‘when’ and that is tearing me apart. I feel like I’m being abandoned, our son is being abandoned … and it’s so damn unfair …. I can’t type anymore, I have to get myself together, I’m at work. Thank you for your website.

Kelly, I am so sorry to hear about your mom. I can’t imagine the roller coaster of emotions the last 4 months have probably been. Glad you found some small comfort in this post, and hope you find our site helpful. Take care.

I am so sorry to hear about your partner’s diagnosis. It is certainly normal to grieve when someone is ill, as we describe in this post. In terms of dealing with everything, try to take things one day at a time. I know that sounds cliche, and is way easier said than done, but panicking about what could happen can make is hard to spend time in the present. If you don’t have one already, a counselor may be a good source of support. They could help you process emotions and seek other tools for coping. If that isn’t right for you, seek some other way to express your emotions- art, journaling, etc. we hope you may find some other ideas here on our site.

Hi, i recently learned that my partner of 19 years has cancer. Althoug we dont know yet the stage, i feel i have began to grieve. Is this normal? Sometimes i feel that i wont be able to deal with the worst case scenario… Any word of advise? Please… Im devastated! He is everything to me.

My mom was diagnosed with stage 3-4 brain cancer in December and I have had a lot of the same emotions that you had. It’s comforting to know I’m not alone in feeling mad, heartbroken, panicked, guilty and exhausted. I am so very grateful my mom is still here but there is a part of her that is now gone that I miss dearly and the thought of losing more or her is overwhelming.

I am so sorry for all you and your husband are going through. Thanks for taking the time to share these great suggestions. I don’t know that much about aromatherapy, but your comment has definitely made me interested in looking further into it!

Brandy, I understand what you are feeling. I haven’t gone through as much with my husband as you have with yours, but it has been nearly 8 years now since he was diagnosed with advanced cancer and there have been multiple surgeries, radiation, cancer, etc. I, too, used to be resilient but have now hit a wall. I, too, have a 7-year-old son. I, too, feel that I have lost myself, withered away to a dry husk. I don’t have much to offer except to say that you are not alone in this experience.

One thing that usually helps me is to use aromatherapy as a direct way of affecting my mood and energy levels. I don’t always feel like bothering, but when I disperse certain oils in a diffuser it can lift my spirits. Plus, I don’t have to leave the house or even take time for this form of self-care. I can close the door and limit it to one room so it doesn’t bother others if they don’t want to smell it. For mood enhancing oils I like sweet orange oil a lot, as well as grapefruit and lemon. For a feeling of reassurance, I like lavender, sage, clary sage, and ylang ylang (sometimes yang yang can seem too cloying, but mostly I like it). Wishing you renewal.

Brandy, not only are you dealing with the emotion or your husbands terminal cancer and your anticipatory grief, but your dealing with the stress of having been a caregiver all these years and with the demands of life and motherhood. It is wonderful to be the ‘tough’ person who perseveres but sometimes this mentality leads people to put good physical and emotional self-care on the back burner and they eventually hit a wall. This may not be your experience at all, but if it is then I’d offer maybe it’s time to find a counselor, support group (grief or caregiving), or to prioritize dealing with your own emotions, physical, and mental health.

I know what it feels like to want “yourself” back but unfortunately after such profound life changes we often can’t go back, we can only find our new normal and a new kind of happiness. I hope you are able to find your way and please please let us know if there is anything specific we can address here on the blog that might be of help to you.

Thank you for this article. I am currently in the depths of anticipatory grief. My husband and partner of 21 years has a rare and terminal cancer. Throughout our relationship he has been sickly. In fact, I’ve gone through 18 surgeries with him during our life together. I’ve always gotten back up and persevered. This time I can’t. I can’t sleep, I have panic and anxiety attacks, I cry, I drink too much. Cancer is killing my family, including our seven year old son. I’ve been told constantly throughout my life how strong I am. I feel like a crumbled shell of my former self and I desperately want myself back.

Hey Alleysue, Gosh it sounds like you have so much on your plate and on your mind. Just based on the limited amount of information you have shared, I would not be surprised if you were experience anticipatory grief among other things. I think it’s wonderful that you’re trying to get in to see a counselor. Do you know if there are any support groups for grievers and/or caregivers in your area? Being a caregiver can be such a stressful responsibility, self care is more important now than ever. Please let us know if there are any resources or topics that we could address that would be helpful for you.

Tonite at mid nite I read found this blog. I have been suffering from an constantly amount of crying and feeling super sad during this holiday season. I normally feel sad during this time of year as I lost my oldest son, who was a high functioning Downs Syndrome young man to a terminal illness 6 years ago. But this year I having a super hard time with feeling a lot of anxiety. My parents are alive at 93 and 94 and are moving into a retirement facility in a few weeks and my husband has Parkinson’s . A friend of mine told me I was having anticipatory grief. I looked it up and that’s exactly how I’m feeling. Super sad, major anxiety like all my happiness has been swept away for awhile. I just try to get one day at a time but I just feel as though I am just existing, just numb. I am trying to get into see a counselor as I know I can’t process all of this without help. I will continue to follow your blog n hopes of understanding my own feelings.

Lela, that is a tough position to be in as a friend going through something so difficult. Clearly you are a good friend if you are looking for ways to better understand and support your friend!

In cases of illness or death it is very common to look for someone or something to blame. As human beings we struggle with the age-old question, “why do bad things happen?”. When the happen to us, we want a way to make sense of it and we often want it to be someone’s fault, so we seek someone or something to blame. If we can’t find a source of fault we can be left feeling overwhelmed that tragic things happen senselessly, for no clear reason. That is distressing, as it makes us realize that sometimes things can happen with no warning and with no way to avoid them. Though that is a sad and difficult truth, if we have someone to blame it give a sense of control and order to things. So, that is the long answer to say, yes, what your friend is doing is very common.

I discovered your blog this evening while searching for ways I can understand the actions/reactions that a father is going through while watching his son suffer from terminal cancer. Tonight I feel bad about a heated discussion that i had with him about him assessing blame for his son’s illness on the child’s mother. (They are not together and have co-parented for years from separate households) He blames the mother for not providing his son with the basic things that he feels could have prevented this illness and improved his overall health like; better nutrition, regularly seeing a doctor, getting better treatment after the diagnosis, etc., and says he feels that if his son lived with him this would not be happening. I don’t know the mother at all, and have only heard stories from him of how she hasn’t been the best mom, but can empathize with her as a parent. I told him that wasn’t fair of him to do and then brought up examples of health related issues that his other kids who are living with him have endured “under his watch”. I feel now that it wasn’t the best time to throw these things in his face. Reading your post gives me better understanding of the anticipatory grief that my friend is going through. I feel like I judged him and will apologize. Never want to hurt him. Is it normal for parents to blame one another for their childrens illness?

I’m so glad something we’ve written has been helpful to you. Please know, what you’ve described sounds totally common and normal. I’m sure you began to grieve as soon as you accepted and understood that your boyfriend was going to die, which may have been days or weeks before his actual death.

I have spoken to many people whose loved ones died after long term illness who went right back to work and regular activities, but worried their ability to do so was wrong or abnormal. In fact many people want to return to the normalcy of the day to day but sadly end up feeling guilty about wanting this relief.

In the end, we all experience grief differently. Hopefully you know yourself and your own feelings, you know what is too much, and you know how to take care of yourself. You will never forget your boyfriend and you will most likely always grieve for him, don’t feel bad about the pace at which you do it.

I hope you check back in with us every once in a while, please let us know if there’s anything specific we can address or answer for you.

Thank you for this blog post. I just discovered your website yesterday and since then I haven’t stopped looking at your entries. I’m actually going to incorporate some of your ideas in my journaling.

I recently lost my boyfriend to cancer in November and it’s been completely disorienting… After he passed on I’ve felt disgusted with myself because I cried more when he was alive and terminally ill. I’ve been feeling guilty and ashamed in myself because I feel like I’ve insulted him. I didn’t know anything about Anticipatory grief until today while reading this blog entry. It’s a relief, I must say, to read this and find that grieving before a passing is normal! I think for me, the anticipatory grief reduced my grieving after his death – or at least it reduced my crying… The way I’m dealing with my own grief is completely different to the way I anticipated… You think you know how you’re going to react, but then your response completely surprises you…

Thank you for this website, it has been a comfort for me during this difficult time….

my husband was ill for 6years with parkinsons and alzchiemers im a nurse so i did take care of him while i worked watched my grandsons and did all other chores that needs to be done then i finally recieved some help from the goverment the nurses aids came in 3 days a week for a few hors which was a great help i could run to the store church or meetings he inally became to hard to take care of with the nurses aids so he had to go into a nusing home i quit working to be there every day with him .this man who taught me so much he was older then me was now an invalid he had a beautiful death as all his children where at his side in hospice even his grandchildrenand his great grandaughter touched his hand while we put her by him on his death bed she was 3months old i never knew about anticipatory grief its 19 months now and i often wondered why it was so hard to understand my saddness thank you & god bless

SC, I am so sorry for the pain of losing your mom, both before and after her death. I cannot thank you enough though for sharing your experience here. Just as you did not know about anticipatory grief, I think there are thousands of others who have never heard of anticipatory grief. I am sure there are many who may stumble on this post overwhelmed, confused, and filled with the guilt and shame you describe. I agree there can be surprising comfort in knowing we are not alone and that our experience is normal, so I appreciate so much your willingness to share.

When my mother was first diagnosed with stage 4 brain cancer, there was so much confusion n’ fear mixed with great hope that she would out-live the ~1 year prognosis. Mother would prove the truth in the miracle stories of beating the unbeatable! For the first 5 months of chemo and radiation, we feared the results before each MRI scan and celebrated each victory when the scans showed tumor shrinkage & improvement.

Eventually, months later, all our fears of death and losing mother forever became reality when the oncologist delivered the dreadful news of tumor regrowth — the tumor was no longer responding positively to continued treatment. Although I had been suffering silently from the beginning, the symptoms of my anticipatory grief intensified and it could no longer be controlled.

Yet, I didn’t know what was happening to me. The frequent panic attacks, anxiety, depression, anger, n’ fatigue made me feel so small that I thought I was losing my mind. I fought with myself to never show it in front of mother, which was difficult beyond belief because up to this point my mother was my source of comfort — she was who I turned to when I was down. So who was I to turn to if not mother? I wasn’t informed that there was such a thing as anticipatory grief — grief only occurs after the actual death, right? So I began to feel judged and misunderstood: Why was I acting so out of character, so strange? Feeling so weak when I should be feeling super strong for my mother whose fear & pain was immeasurable compared to mine? I began beating myself up for the daily exhaustion, especially when witnessing my mother’s health deteriorate — she is a million times more exhausted than any of us. It broke my heart to see the fear in her cries and the vulnerability she expressed when slowly losing control of her mobility and in her ability to effectively communicate her needs. I became a stranger to myself and felt judgment in my breakdown from those around me. “You are the strong one, your family is counting on you,” I kept hearing every time a request was being made. Who gave me this role of being the strongest one? These expectations were telling me that I wasn’t allowed to cry and breakdown like everyone else.

Relatives & Friends tried to encourage hope that there was still a chance even when mother couldn’t recognize most of us anymore. I couldn’t help but angrily laugh at their attempts to soothe my fears and exhaustion. These types of encouragement actually made it worse for me, for it triggered feelings of guilt and shame — that I didn’t believe in mother’s recovery — as if I didn’t want it, which was far from the truth. I knew the facts from endless nights of extensive research on her disease. In my pain, I interpreted the advice from supporters that my feelings of acknowledging the truth is “bad and unloving” — and feelings of ignorance and hope is “good and loving.”

It wasn’t till after mother’s passing (10 months after her diagnosis) and experiencing the “after death” Grief that I learned about Anticipatory Grief. If only I had known and understood that grief started on that very day mother was diagnosed…perhaps things wouldn’t have been so suffocating and full of judgment with “the world is against me” outlook….or perhaps things would have been the same. Nonetheless, this information does matter & is important for those who are going through the painful experience and difficult journey of a loved ones terminal illness. It is important to share that their emotional turmoil is common and they are not alone. I am grateful for posts such as this one on Anticipatory Grief. Thank you.

Wow- this is the only thing so far that comes close to what i am going through right now. Almost 1 year ago- my mom revealed to me and my kids that she has cancer. She was diagnosed with late stage uterine cancer. The first step was a total hysterectomy with the inclusion of lymph node removal. Three weeks later she began chemotherapy. She had a port installed in her shoulder/clavical region for easier administration of the meds. Each session was about 3 hours long. There were 6 rounds to comeplete this process. They were scheduled 21 days apart. 14 days after her first chemo all her hair was gone, eyelashes, and eyebrows, her fingernails loosened, and she had no taste buds at all. Although i was horrified at what i saw her go through- she was strong-had a hair piece made and wore it- looked like she was ” just fine” however, the next testing revealed the cancer had moved out of the uterine area and was spreading. Then radiation was scheduled. One day shortly after first radiation, mom was making crepes and when she came to the last ingredient(flour) her brain was not telling her hand to move. She lost balance and nearly fell down the stairs! It was time to get to the hospital. After a mri- we were told that moms cancer crossed the blood brain barrier, and now needed immediate whole brain radiation treatments to stop the symptoms and swelling! Now her prognosis was even less.. Yet she came through the radiation with flying colors- taking steroids made her hungry and energetic at first- then took away all muscle strength- made hair grow on her face and around mouth-her face and head swelled up into something we nearly dont recognize- yet she has no pain- she tried two rounds of experimental chemo and unfortunately they didnt work to attack the cancer. My mom is currently in hospice in a nursing home with a 24 hour O2 tank. She is growing more confused and sleeps so much- she still eats maybe because of steroids- but drinks very little- urinates every 9-12 hours- she cannot walk anymore so she lays in her bed.. Day and night- also the hospice bed cannot be controlled by her- she has to wait to be adjusted.. Its hard to see this- i visit with my son who is 9- whether she remembers i even came or not, im not sure. Sometimes i cannot go there – my dad says im terrible- and others go more frequently- but im an only child and my dad is not even accepting reality right now- so i feel ashamed, yet unlike my father… I spent time while she could talk walk and play board games- went shopping .. While others were nowhere to be found- and my dad just felt sorry for himself… Im torn

Thank you for this post Jennifer Jane. My mother is also in hospice due to many many brain Mets. She did well thru radiation but declined chemo. It’s been a rocky road for us since April this year. We were told last week that my mom likely had only days left, yet here she is! How is your mom doing? I’m very anxious as I don’t know really what to expect. Thank you for reading, love and light to you!

My father lived with us for 5 1/2 years before he died. He had progressive dementia. I was mourning from the time that I noticed his memory fading. It was both anticipatory and present as I was also mourning what was already lost. He died about 15 months ago. I was with him. After he had taken his last breath and I knew that it was over, I put my head down on the bed and fell asleep. My job was done. The years of fighting for him, caring for him, being his voice, doing things with him. Making sure that his life was the best that it could be were over. I remember thinking that my job was done. There was some relief, but more than that, a sence of peace. I had done my very best out of love. I had sacrificed my time, my relationships, my very self, out of my love for him. There was nothing else I could have done. I miss him to this day. The strangest part was missing him and wishing he was still here, but not as he was before he died, the way he was 10 years before. Realizing that just having his death postponed was not something I would have wanted. What I really mourn is the man my father used to be.

Thank you. We are going through this exact thing right now. My mom is at the 10 month mark with brain cancer. The tumor is growing. I live away from her, but visit often. So afraid of what is to come. I have grieved the loss of her ( the changes) and that she was my biggest confidant. I feel like I have already lost so much. I feel uncomfortable with the feelings like because she is different, like the person she was is already almost gone. I would take more years of her as she is of course, but I am still grieving the loss of what was.

My mom was 56 when she first was diagnosed with lymphoma. The day the oncologist called notifying me that my mom has lymphoma with a very late stage! was terrifying for me. Fear, anxiety, depression, anger, so many things had me uncontrollable of myself. It felt like the sun wasn’t giving light neither the moon. i was so horrified!. I watched my mother fade away slowly as she was fighting mantle cell lymphoma. i looked after her everyday as best i as could, but the feeling of helplessness was unbearable. every time when she wanted to speak with me to get some kind of a closure, i avoided the conversation by saying ” everything is going to be alright”. i couldn’t bring myself to talk to her although i wanted to say so much and i had so much questions. She had a long duration of days with pain and hospitals almost every day. She couldn’t go a day without going to the ER. Seeing her suffer was physically, mentally and emotionally exhausting . I was experiencing anticipatory grief without me knowing about it, i cried and suffered alone. As if it was like torturing! The fight wasn’t easy, so believe me, i understand each one of you who is suffering with this. You are not alone, and i already know so many people who have experienced anticipatory grief. I’m sure this will go away some day, days go by the pain and grief will be less than before.

My girlfriend just called me to say, “I think I know what you have”. So I checked out the website. Yup, that sounds like me. I have never heard of anticipatory grief before, but I can look back now and say, my mental breakdowns were this and that is happening NOW! As a caregiver for 5 relatives throughout my life, now we are having to place my Mom into a retirement facility. We were looking at one the other day and invited for dinner there. My Mom and sister ate their soup, I drank my water and the uncontrolled sobbing started. My sister said “get a grip!”, Mom excused us from the table and apologized for her daughter. I apologized to the owner and said I couldn’t help myself and I can’t control this. The fear of losing my Mom someday, ….. once we find the problem, it is unbearable. I can’t explain my feelings. I watched my Dad … die, grandparents, aunt and uncles, …. but my Mom? ….. no way, I still need her … even at my age. So much, still to talk about, she can’t be at this stage of her life, leaving her independence and going to a … retirement home? I could write more but will stop now. I hope to learn more as I read on. Thank you Donna, this is perfect for me to read!

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